Reflections from the outgoing Taskforce Chair

Dr Alison Cook

My reflections as Outgoing Chair of the Taskforce of Lung Health

- Dr Alison Cook

Over the last few years, it has been my immense privilege to lead representatives from across patient groups, professional associations, charities and industry, to set up and run the Taskforce for Lung Health. Our alliance has made profound progress in pushing forward the respiratory agenda.

When working to improve policies and practice in healthcare, it can feel like progress is frustratingly slow. But when you look back at the past 5 years, we have achieved a lot.

Crucially, respiratory has landed in its rightful place as a national clinical priority in the NHS Long Term Plan, the NHS’s own 10-year strategy for improving and reforming healthcare, alongside other diseases, such as cancer and dementia. This is the essential recognition that had been missing for too long, and it provides the opportunity for the respiratory community to push for improvement. It should also help ensure that as the NHS re-starts following the COVID-19 pandemic, there will remain a much-needed focus on improving respiratory care across the board.

To help drive progress in the NHS, we have seen the establishment of Respiratory Networks around the country. These bring together leaders from the NHS and social care with the aim of transforming the diagnosis, treatment and care for respiratory patients in their local area. Over the last year or so their focus has been on Covid, but they can now turn their attention again to delivering the Long Term Plan, and crucially sharing best practice in making early and accurate diagnosis a reality for the hundreds of thousands of respiratory patients who deserve a good service.

The networks are now well placed to drive the uptake of the newly published NHS diagnostic pathway for breathlessness. This pathway was based largely on the model pathway the Taskforce developed. The breathlessness pathway was developed by Taskforce members to prompt the NHS to outline the steps that people will go through from when they first turn up at their doctors to explain their symptoms, through to getting a diagnosis. What this does is provide a way of knowing whether people are getting a prompt and efficient service and gives the Taskforce a way of comparing how different areas of the country are performing so we can make sure that no one is left behind. Although at the moment the NHS is not as ambitious as we would like with the time they think people should wait, it’s a great start.

I am also positive because NHS England now has a greater recognition of the role, and value, of community pharmacists in supporting people to stay well and manage their respiratory health problems. Taskforce co-hosted a workshop with NHS England, surveying 2,157 people with lung disease and carers, who use community pharmacy as part of their usual care and could tell us what they wanted from their local pharmacist. Looking ahead we can see a way to having direct GP referrals, smoking cessation and inhaler technique checks as universal services.

Similarly, there is now increased understanding about the value of pulmonary rehabilitation (PR). We have seen this service recognised as a treatment for people affected by long COVID-19, which has meant that this rather invisible but highly effective treatment has reached a wider audience. I am confident that given the strong patient reported outcomes associated with PR, we will see more respiratory patients benefit from this evidence-based treatment at MRC grade 2 and not have to wait until their disease gets worse before they can access PR. 

However, whilst these, and other achievements, provide important stepping-stones to deliver lasting change, there is still much that needs to be done. Taskforce’s 43 recommendations remain as relevant now as ever. Looking ahead, to help achieve the greatest positive impact, I believe there are four fundamental themes for consideration and action:

1     Models of change

The 40 new community based diagnostic centres the government has pledged to set up as “one-stop-shops for checks, scans, and tests” offer the promise of an easier, more rapid and accurate way for patients to receive a diagnosis. But critically these changes need to be assessed in terms of the benefit they bring to patients; no proposal for change in the NHS should be made without a clear explanation of what that benefit will be.

For the community diagnostic centres and other areas of innovation to stand a chance to deliver widespread change, urgent action needs to be taken to address the significant staffing shortages. These exist across a wide range of health care professions that help to deliver respiratory care, including, but not limited to, GPs, respiratory nurses, physiotherapists and imaging specialists. Alongside increasing the number of staff, there needs to be a significant boost to training and development to support mixed teams of healthcare professionals to collaborate effectively to deliver the highest level of care to patients.

2     Making more people aware of lung health

We have ample evidence about the threats to lung health that come from poor quality air, smoking and work-related risks. We know what needs to be done, yet opportunities for prevention are being missed. There has to be broad public support for change.

In summer 2022, Taskforce will launch a second public awareness campaign in Birmingham to help people connect with how vital their lungs are to their enjoyment of life. I hope this campaign will go from strength to strength, that there will be long-term interest and funding to raise awareness throughout England about the value of protecting lung health, and that this translates into positive political action. 

By running a positive public awareness campaign about the value of lung health, we plan to reach a broader audience and begin to tackle existing health inequalities. The poorest in our society have an increased risk of developing respiratory conditions, and the rates of dying, for example from lung cancer or pneumonia, are much worse than they are for those living at higher ends of the social gradient. Awareness of lung health is the first step for anyone, but individual awareness has to be combined with action by local care systems to draw up plans, and deliver action, to reduce inequalities, backed up by an accurate allocation of funding to areas according to unmet need.

3     Value of data

The Taskforce’s excellent lung health data tracker has a vital long-term role in providing meaningful data, in an easy-to-understand manner, to anyone wanting to monitor progress across a wide range of indicators for respiratory health. The COVID-19 pandemic has illustrated what can be done when there is the will and resources available to collect data about a respiratory disease. We now need that same attention for all lung conditions.

The Taskforce is funding some vital work to see how many people are living undiagnosed with COPD and to find out how long people are waiting for a diagnosis after their first visit to a GP with symptoms. But we need more commitment from the NHS to monitor lung disease diagnosis and treatment in the same way they do for other disease areas like cancer and heart disease. This would go a long way to giving people confidence that lung disease was going to receive the investment it needed and make access to diagnosis and treatment equitable for everyone around the country.

4     Making it matter for patients

My final and most important rally-call to everyone, is to make sure that all work that is done is fundamentally shaped around what matters most to people living with, or at risk of developing, lung disease. An easy way of making sure this happens is to give patients the means and opportunities to share their experiences to help shape the delivery of services. And for policy makers, commissioners, and clinicians to value the expertise that comes from personal experience of the NHS and to listen and respect the choices that patients would like to make. Alongside this, it is vital that when policies and practices change, these are meaningfully communicated to people – by clearly explaining what the benefits will be.

Looking ahead, there are many major unknowns for Taskforce members to negotiate, amongst them the lasting impact of COVID-19 on the health of those infected, the ability to recruit and retain a skilled workforce, and catching-up on missed diagnoses. However, despite this, I feel confident and optimistic about Taskforce. We have proven ourselves to be an extremely effective alliance, with our diverse range of highly capable members and staff, bringing important benefits and creating real impact from our united approach. We have achieved profile and authority because of our combined expertise, hard work and persistence. I’ve every confidence that Taskforce’s ambitions and spirit of collective endeavour will grow under the direction of the new Chair and Secretariat team. And that Taskforce will continue to connect people and organisations to the possibilities of how to make life better for people with lung conditions. 

Thank you to everyone who believed in the vision, and who helped make it a reality by contributing their time, wisdom, energy and resources. Together we have built a Taskforce for Lung Health that is a true force for positive change and have also made lasting friendships along the way. I wish you all the very best.

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28 April 2022