“When you have Chronic obstructive pulmonary disease, everything, everything changes – As it gets worse, you seem to be able to do less and less of the things you have always done […] you feel like you are dying, you just cannot breathe”
Chronic obstructive pulmonary disease (COPD) is the description of a collection of lung diseases including chronic bronchitis, emphysema and chronic obstructive airways disease. It is estimated that around 800,000 patient in the UK suffer from COPD with an additional 2 million more undiagnosed. It is the main reason for hospital readmissions across the UK, the fifth most common cause of death. It costs the NHS £1 billion in direct health costs but nearly £4 billion in productivity loss with around 24 million working days lost every year.
At the same time, there is good evidence on clinical and social interventions that work for COPD patients (and also what doesn’t work). For an overview see the London Respiratory Team’s comprehensive summary of medically effective interventions and their value for money.
Locally, the NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for North West London (NWL) have developed an evidenced based COPD care bundle for patients admitted to hospital with an acute exacerbation of the condition. The bundle sets out five interventions that together improve the patient’s care and prevent future readmissions. The bundle comprises the provision of smoking cessation, structured pulmonary rehabilitation, a review of the inhaler technique and if required patient education, the provision of patient information, and pre-defined follow-up arrangements.
As the Academic Health Science Network (AHSN) for North West London, Imperial College Health Partners (ICHP) includes in its key objectives the assessment of population health need, identification of best practice against that need, and spread of that best practice. COPD was identified as a good topic to be one of the first projects for ICHP since it is the cause of significant morbidity and mortality, has known best practice interventions, and has been the subject of detailed research locally.
When we started the project there was no comprehensive overview of the current service provision across providers, the actual performance of local services against known best practice, or the overall patient experience. Accordingly one of our first tasks was to conduct a strategic review of COPD in NWL. In just over five weeks a joint team consisting of ICHP, CLAHRC, a consultancy firm, a data visualisation company and a leading pharmaceutical company assembled as much knowledge as possible. The resulting evidence highlighted a series of issues.
- There are around 20,000 diagnosed patients registered as suffering from COPD in the sector. It is assumed that, in common with the rest of England, there are significant numbers undiagnosed. The local health economy spends around £25 million per year on treatments and care for the condition. There are just over 3,000 admissions (averaging 1.6% of all hospital admissions) and around 900 readmissions for the condition costing hospitals just over £8 million per year (with around £2.5 million for readmissions). This may appear less than one might have expected. For example, coronary heart disease costs the sector around £100 million per year with about half of this occurring in secondary care. This is in the context of £3.4bn spend in the local health economy overall.
- There is significant variation of prevalence of the condition, and of, admissions, and readmissions across CCGs, individual general practices, and acute hospitals.
- There has been extensive research into the effectiveness of clinical interventions for COPD. Active pulmonary rehabilitation, smoking cessation, medication optimisation and training in the correct inhaler technique had all been conclusively demonstrated to be best practice interventions for the condition in the community care setting. Research undertaken by the CLAHRC in NWL has further demonstrated the effectiveness of the defined care bundle in the treatment of patients admitted to hospital with acute exacerbations of the condition.
- There is no comprehensive geographical or other map of existing community based COPD services, particularly for pulmonary rehabilitation which, along with smoking cessation and inhaler technique training, is the most potent of the available interventions. However, the information we do have on the geographical spread of services seems to suggest that there is an insufficient match between availability of services in a locality and local prevalence of COPD.
In the absence of linked data the healthcare system is unable to trace patients through the system to monitor whether those referred to services such as pulmonary rehabilitation or smoking cessation actually turn up and complete their treatment. However, two case studies from Hillingdon and Imperial College Healthcare Trust suggest that only between 15-30% of patients who were admitted to hospital for acute exacerbation of the condition completed a course of pulmonary rehabilitation. A significant proportion were not referred because of local referral criteria, but many either did not attend the initial assessment or did not complete the course. Reasons for this include travel arrangements and local accessibility. Also, the majority of patients get referred to interventions from secondary care rather than primary care where awareness of treatment options is often limited.
Work has recently commenced in North West London to establish an agreed pathway of care for patients with COPD which includes criteria for referral on to interventions such as pulmonary rehabilitation.
Although certain interventions such as pulmonary rehabilitation have been established as effective treatment for the condition, common (national) standards for the design of these services are only recently being developed. Where such services have been commissioned, it is likely that they are of varying nature and quality.
In common with many areas of care, commissioning for pulmonary rehabilitation and similar services is not based on completion of effective treatment or on outcomes of care. But even where they are, contracts are not always managed effectively. There are thus no incentives or requirements in the commissioning system to track patients and to verify that they have received the care they have been prescribed. This has been reinforced by interviews with local general practitioners, among whom a common complaint is the lack of information from providers as to what happens to their patients when they refer them for a course of care.
In summary, the strategic audit concluded that, despite clear statements of effective practice and clinical guidance, there is:
- A lack of visibility of what has been commissioned and outcomes across sectors
- High variability in COPD registration and hospital admission rates in primary care
- A focus of secondary-care interventions on transition of care at discharge
- Mixed quality and accessibility of pulmonary rehabilitation and smoking cessation across NWL
- A gap in patient knowledge/ engagement
These are most certainly not uncommon challenges and they are likely also to be found in the cross-system care of other long term conditions. They are also not the fault of any one party but are a consequence of historical structures and the degree of fragmentation across the system. They highlight the need for a collaborative approach across all parts of the health system to establish a coherent service that is available across the population.
As a partnership of providers, academia and commissioners, ICHP is in a unique position to bring member organisations together in a common purpose to establish this collaboration to put in place the service that is required. We are also able to draw in industry and other partners as required from whom there is substantial interest.
In particular, we are now pursuing a number of work streams to move COPD provision to outcome and evidence based footing. This includes establishing the care gap and required capacity in primary care, meaningful and measurable outcomes, as well as a commercial model that rewards outcomes and accountability.
We have written up this example to make a number of points. First, a robust understanding of the status quo is essential. The project started off being focused on secondary care but the strategic audit quickly suggested that the main challenges are in community and primary care. Second, having best practice defined and codified for one part of the patient pathway (in this case secondary care) is not sufficient. Finally, the lack of linked data provides a real challenge to plan, provide and assess services effectively and safely.
Image source: www.smi-online.co.uk