Working Towards an Action Plan for NTM-PD

Solving the national respiratory crisis

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Respiratory diseases cause unnecessary suffering and avoidable deaths. Whilst most major disease areas show a reduction in mortality rate over time, there has been no such improvement in the mortality rate attributable to respiratory diseases in over a decade.1 Costing the NHS an estimated £11 billion each year, respiratory diseases place a huge burden on the national health service in terms of both number of admissions and overall cost. Something needs to be done.2 So what action plan does the country have in place in order to solve the national respiratory crisis?

A National Five Year Plan for Lung Health

The UK Taskforce for Lung Health five year plan, ‘A National Five Year Plan for Lung Health’, aims to create a society where everyone can live with healthy lungs for as long as possible and have the best chance of living, or recovering, when lung disease develops.2 The Taskforce for Lung Health state that its mission is to prevent more people from developing lung diseases, and transform the care of people living with lung disease.3

‘Keeping lungs healthy’ is the strapline for the first category of recommendations. This includes the aim to decrease the adult smoking rates and the introduction of Clean Air Zones in areas of high exposure to pollution. Also in this category, are recommendations to increase the rate of flu vaccinations among the clinical at-risk groups and to improve awareness of and compliance with the Control of Substances Hazardous to Health Regulations to minimise occupational lung disease.2

The earlier lung diseases are identified, the better the outcome for the patient.2 Damage to the lungs is irreversible, so early and accurate diagnosis is a window of opportunity to make a real difference to a patient’s life.4 The Taskforce for Lung Health include recommendations to identify lung diseases earlier by creating a clear patient pathway, developing formal referral systems and consistent guidelines, introducing targeted case-finding for people who have symptoms of chronic obstructive pulmonary diseases (COPD) and implementing a comprehensive national lung cancer screening programme.2

The report continues to make recommendations around the care for patients who have already received a diagnosis and are living with long term lung diseases. Personalised care and support plans for every person with a respiratory disease have been proposed, alongside improved access to pulmonary rehabilitation for those who need it.2

Further recommendations include implementation of guidelines around enhanced recovery after surgery and the creation of generalist and specialist respiratory and end of life services, to improve end of life care.2

Working towards an action plan for NTM-PD

Long Term Plan

The National Health Service ‘Long Term Plan’ was drawn up in January 2019 by front line staff, patient groups and national experts to be ambitious but realistic in achieving a service which will be fit for purpose 10 years from now. In chapter three of the report, the NHS outline how they hope to achieve better care for major health conditions. For respiratory diseases, some of the main areas of focus are to: increase education, improve rehabilitation and achieve earlier detection. The ambition is to transform the outcomes of those living with respiratory disease to equal, or better than international counterparts.5

Variability of testing across the country is a leading cause of delayed diagnosis for respiratory conditions. Research has indicated that up to two-thirds of people with COPD remain undiagnosed.6 Furthermore, currently around a third of people with a first hospital admission for a COPD exacerbation, have not been previously diagnosed.5 The NHS report outlines the importance of reducing variation in testing and hopes to achieve this by utilising primary care networks to support the diagnosis of respiratory diseases. By increasing the staff numbers in primary care and improving training, they hope to provide the specialist input required to interpret results.5

Incorrect use of medication contributes to poorer health outcomes and increased risk of exacerbations and admissions. Supporting pharmacists in primary care networks and giving them the training to undertake a range of medicine reviews will help to educate patients on the correct use of their prescribed medication. This idea has been outlined as an important implication in reducing the incorrect use of medication. Reduced prevalence of exacerbations will result in an improved quality of life for patients with respiratory diseases. Additionally, enabling more people with lung disease to complete programmes of education and exercise rehabilitation will result in improved exercise capacity and quality of life in up to 90% of patients.5

The rehabilitation of patients with respiratory diseases is important. By expanding pulmonary rehabilitation services over the next 10 years, the NHS aim to prevent an estimated 500,000 exacerbations and 80,000 admissions in relation to inadequate rehabilitation resources. Population managed approaches in primary care will find eligible patients who have not been referred for rehabilitation, helping to reduce preventable exacerbations and admissions in the future.5

4-Point Plan

The British Thoracic Society (BTS) ‘4-Point Plan’ to help reduce respiratory pressures on the NHS in the winter, outlines the need for urgent action to help address the problems that respiratory diseases cause, in an attempt to ‘break the winter cycle’.7

Approximately 4 in 10 hospitals in England had at least one vacant respiratory consultant post in 2018, a situation which has persisted for at least 2 years.7 The BTS plan calls for an additional 100 respiratory specialist training posts to be created over the next 5 years to help bridge the gap between the increasing demands for specialists within the field of respiratory and the availability of these consultants.7

Joined up care, a process whereby health care professionals work more closely and effectively, has shown to deliver both health and economic benefits. These include faster access to specialist respiratory expertise in the community, vital changes to patient medication and treatments, and reduced hospital admissions. A number of local areas across England have formed integrated lung teams which operate across the whole of the NHS and care systems. However, they do not exist across the whole country and as such the BTS recommends NHS England should provide a vision and plan on how good respiratory practice should be scaled and shared across the NHS to improve the current variability in care.7

Given the significant impact respiratory diseases place on both the healthcare system and patients, it is disappointing to learn that funding into research, does not appear to place them as an area of priority. In 2018 the UK Clinical Research Collaboration (UCRC) found that just 1.8% of funding, from all bodies included in the study, went into research on respiratory diseases.8 Other statistics on funding mirror that of the UCRC report. The UK government spent twice as much on research into cardiovascular disease in comparison to what was spent on respiratory research. The BTS has called for the Government and research bodies across all sectors, to agree a target for spend on respiratory research. They have stated that an appropriate allocation of research funding should be linked to delivery of key national goals.7

Where does NTM-PD fit into these plans?

Only time will tell if the outlined action plans will solve the respiratory crisis. There are specific recommendations on the development of care for patients with COPD, Asthma and other respiratory diseases. However, non-tuberculous mycobacteria pulmonary disease (NTM-PD) has been overlooked in all of the outlined long-term plans. Having said this, the British Thoracic Society (BTS) has done a significant amount for NTM-PD, publishing guidelines, summary papers and slides for download to increase awareness and provide recommendations for its management and treatment. There is clearly still more to do though.

Developing an action plan for NTM-PD in the UK

American literature has already made recommendations on how to manage and eliminate NTM-PD. Better diagnostic testing, treatment pathways for patients and research into discovering new drug therapies make up the focus of the long-term plans to tackle NTM-PD.9 The drive towards change in respiratory diseases is positive in the UK, but more needs to be done to highlight the importance of NTM-PD specifically. As in the case of other respiratory diseases, task forces, expert working groups and specialised services dedicated to NTM-PD could be developed. Additionally, the work of NTM-PD physicians and patient groups should not be underestimated in the journey to developing an NTM-PD action plan.

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Job code NP-UK-00130. Date 1 Apr 2020.