A prescription for change

In November 2020, the patient representatives of the Taskforce for Lung Health, supported by the wider Taskforce membership, wrote a letter to the Secretary of State for Health, Matt Hancock, and Sir Simon Stevens, Chief Executive of NHS England, to call for a commitment towards delivering genuine change and progress for people living with lung disease. You can read this in full, below.

Monday 16 November 2020

Dear Secretary of State and Sir Simon,

The consequences of the COVID-19 pandemic have placed exceptional demands on the millions of people living with lung disease and the healthcare professionals caring for them. Many services have been seriously disrupted, resources have been reallocated and shielding requirements have meant day-to-day life has been severely interrupted.

More positively, we have seen opportunities for improvement in services as respiratory disease is now in the spotlight like never before; there has been a rapid roll-out of digital modes of delivery and the introduction of other welcome innovations; and healthcare professionals have shown extraordinary hard work, dedication and resilience under the most trying of circumstances.

As patient and carer representatives who sit on the Taskforce for Lung Health, the largest ever coalition of individuals and organisations working together to improve lung health, we are writing to you now to ensure that urgent action is taken to build on the best of the recent adaptations, alongside delivering the Taskforce for Lung Health’s recommendations in full.

People with lung disease do not want to simply go back to the way government and the NHS did things before. Not only is returning to life pre-COVID-19 unrealistic, it is also not good enough. We do not want to ‘lock in’ the limitations, stagnation and inequality that have persisted in the respiratory community for years, resulting in no meaningful improvement in outcomes for more than a decade. Instead, we urge you as part of your decision-making, for determining what and how services will be re-started and delivered now, to commit to do more, and better. We want to ensure that fellow respiratory patients are able to live full and rewarding lives, with access to appropriate treatment for their conditions.

As patients and carers, we set out here our prescription for change and we urge you to please allocate the commitment and resources to delivering genuine progress. Further details are available in the Taskforce’s five year plan for improving the nation’s lung health.

1) Keeping lungs healthy

Many lung diseases are avoidable. It is vital that we go ‘upstream’ to prevent lung disease developing in the first place. We want to see more being done to tackle risk factors that include smoking, occupational hazards and air pollution. We also want a significant upscaling of flu vaccination programmes, for health and social care professionals, as well as the public, not just this winter, but on a long-term basis.

2) Identifying lung disease early

It can take years for people to get the right diagnosis, and there are too many patients who are misdiagnosed. Receiving the right diagnosis is vital as it opens the door to support, treatment and ultimately, better outcomes for patients. We are pleased with the announcement that there will be new community diagnostic hubs. These must be in place as soon as possible, offering a range of diagnostic tests, staffed by skilled professionals. It is essential there are no further delays in the public getting easy, safe and timely access to diagnostic services that are based in their community.

3) Better care for all

In most cases, lung disease is a chronic condition that people have to live with for many years, and often for the rest of their lives. Over time the illness can progress, symptoms can change, and people’s treatment and medication are likely to need to be modified. Despite the current challenges in offering routine care, we must ensure there is accessible, regular and ongoing assistance provided to people to manage their symptoms, to ensure the medicines they have been prescribed continue to be appropriate and are being used safely. We welcome the opportunity for these checks to be provided in a range of different ways, including face to face, video, phone and digital, but the provision must be based on what patients prefer and their own clinical needs. We also need patients to be given timely access to mental health support and approved treatments; too many have to wait until their condition worsens before they receive appropriate treatment.

4) Living with a lung disease

The evidence is clear that when people are empowered to take an active role in their own health care on a day-to-day basis, their health is better, and this reduces the cost of treatment they need. During lockdown many patients have had no choice but to take on much more active management of their own condition. To help even more people to do this, and to do it well, we want to see more investment in supporting patients to develop and maintain their skills and confidence to be able to manage their own care. We also want health care professionals to be trained to value the positive role of self-management so that they can encourage their patients to practice it and build it into personalised care plans. Providing pulmonary rehabilitation (PR), a programme of exercise and education, helps people with lung conditions manage the impact of breathlessness, improve their fitness and muscle strength and have access to mental health and psychological support. Despite the fact that it is one of the most effective interventions available, and has a greater positive impact than many drug-based treatments, access to PR is woefully low. The recent adoption of digital provision is to be welcomed, as it can help increase participation, but we want to see it form part of, rather than replace face-to-face provision to make sure as many people as possible with lung disease have the opportunity to not only access, but also to complete PR.

5) Right care in the last year of life

The scale and speed of the COVID-19 pandemic has meant many more patients with lung disease and their families have had to face decisions about end of life care. We must not allow the unpredictable nature of lung disease to prevent everyone with lung disease, including COVID-19 patients, to have their say about where they die, and to be able to plan the care they want. 6) A workforce for the future We want to see people with a lung disease supported by teams of different health care professionals who come together to meet each patients’ needs. To achieve this, there needs to be a significant upscaling of the respiratory workforce and an increase in training and skill development. We also need the workforce to be able to collect, access and use all relevant information about a person with lung disease, with their permission, in a timely way. And this must be accessible to people with lung disease themselves.

For far too long people living with lung disease have not had their needs met and we’ve been invisible in the planning and delivery of health services. There has been some cause for optimism since tackling respiratory disease became an official priority for the NHS for the first time in 2019, but we are deeply concerned that COVID-19 is threatening that progress. It is diverting policy attention, resources and funding from the commitments made in the NHS Long Term Plan.

We urgently need government and services to commit to delivering our prescription for change and provide real detail on how respiratory care is going to be restarted, with better care provided. As patients and carers, we want to see not only the short-term restoration of services, but more importantly the delivery of the NHS Long Term Plan and longer-term progress in outcomes that is needed to really benefit the lives of the millions of people living with lung disease. We deserve nothing less.

If you have any questions about our prescription for change, please get in touch with Lucy Bramwell, Senior Policy and Project Manager for the Taskforce, on lbramwell@auk-blf.org.uk.

Yours sincerely,
Carol Liddle
John Conway
Julie Reynolds
Kimberlee Cole
Lehanne Sergison
Maxine Flewett

Taskforce for Lung Health patient and carer representatives

Supported by:
Action for Pulmonary Fibrosis
Association of the British Pharmaceutical Industry
Association of Chartered Physiotherapists in Respiratory Care
Association of Respiratory Nurse Specialists
Association for Respiratory Technology and Physiology
Asthma UK
British Geriatrics Society
British Lung Foundation
British Society of Thoracic Imaging
British Thoracic Society
The Chartered Society of Physiotherapy
Cystic Fibrosis Trust
Interstitial Lung Disease Interdisciplinary Network
Dr Jonathan Freeman: clinical psychologist
NHS RightCare
Pharmaceutical Services Negotiating Committee
Pulmonary Fibrosis Trust
Primary Care Respiratory Society
Respiratory Futures
Roy Castle Lung Cancer Foundation
Royal College of Anaesthetists
Royal College of GPs
Royal College of Nursing
Royal College of Paediatrics and Child Health
Royal College of Physicians
Royal College of Radiologists
Royal Pharmaceutical Society
Society for Cardiothoracic Surgery, on behalf of the Royal College of Surgeons

1. The Taskforce is a coalition of 35 members, including patients, health care professional associations, royal colleges, the voluntary sector and industry. In 2018 we developed a five-year plan for lung health that makes 43 recommendations that we believe, if implemented, would improve outcomes for everyone living with or at risk of a lung disease.
2. A survey by the Asthma UK and British Lung Foundation Partnership of over 8,000 patients with lung disease found 35% reported having their care delayed or cancelled during lockdown, and around 25% said their symptoms got worse due to their care being delayed or because they avoided using a health service.
3. The number of missed urgent and routine referrals for respiratory care during lockdown is calculated as the difference between the baseline (expected) number of weekly referrals (7 October and 29 December 2019) and the actual number of weekly referrals (16 March and 25 May 2020).

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1 February 2021