In many ways, domains 1 and 2 of the NHS Outcomes Framework are two sides of the same coin. Domain 2 is about long term conditions, yet many people with a long term condition will die from it prematurely if they don’t receive the right treatment (a Domain 1 issue). Equally, it makes intuitive sense that good patient experience (Domain 4) and quality of life are linked. Recovery from illness (Domain 3) and patient safety (Domain 5) also play a big role in quality of life. So what is left for whoever leads Domain 2?
I do not ask this question in a flippant way, nor because I wish to diminish the importance of managing long term conditions effectively. But there is a real danger that, unless the domain lead carves out a space for themself, Domain 2 could be squeezed out, much as has happened to the long term conditions agenda in the past.
The Domain 2 indicators (health-related quality of life, employment, feeling supported and something to be defined for dementia) are clearly important, yet it will be more difficult to gain traction on them than some of the measures in Domain 1. Quality of life scores are harder to understand and – wrongly – are not given the same credence as ‘hard’ outcome measures such as survival: just think about the scorn which met David Cameron’s Measure of National Wellbeing (or ‘happiness index’). Perhaps more significantly, on most of the quality of life measures there is no baseline and international comparisons are very difficult to make.
The immediate task for the lead for Domain 2 will, therefore, be to establish some processes for measuring quality of life for people with long-term conditions and tracking changes within it. Progress is already underway on this. For example, in cancer, a large scale survey has been undertaken assessing the quality of life reported by patients with bowel, prostate and breast cancers, as well as non-hodgkin’s lymphoma at various points after their diagnosis. The results, expected to be published this summer, will offer clues as to whether (and how) such exercises can be undertaken at scale.
Thought will also need to be given to how employment measures can be used at a time when the economy is struggling. The NHS Outcomes Framework publication for 2012/13 notes that there are ‘external influences’ on outcomes which are beyond the control of the NHS. This is clearly the case for employment measures. It is all very well the NHS supporting people with long term conditions so that their quality of life is such that they are able to work, but if the jobs aren’t available for them, then employment rates will remain low. As the technical guidance on the indicator acknowledges, “it is possible that the buoyancy of the labour market has a disproportionate impact upon the employment of those with long-term conditions.”
The second challenge will be to make action on long terms conditions meaningful to patients and healthcare professionals. According to the Department of Health, there are at least 15 million people in England with at least one long term condition, but for most of them this will be a meaningless term: they will consider themselves to have a diagnosis of diabetes, depression, asthma, high blood pressure or whatever their condition may be. Long term conditions is NHS-speak, not patient speak – there is, after all, a reason why intellectual recognition of the importance of managing long term conditions has never really translated into concerted political action. The domain lead would do well to recognise this.
Although there are important commonalities between the care and support needs of people with ongoing health problems, there are also important differences. The Department of Health may have erred in the past by failing to recognise the similarities between different conditions, missing opportunities to join up action as a result, but the NHS Commissioning Board would be making a mistake if it failed to recognise and address the differences that do exist.
There has been much debate about whether disease-specific strategies (such as that on chronic obstructive pulmonary disease) or cross-cutting ones (such as that in development on long term conditions) are the future and, to date, a mixed approach has been adopted. Of course, chronic obstructive pulmonary disease is also a long term condition and so will be covered by both its own strategy and a cross-cutting one. This approach is sensible, allowing the disease-specific issues to be addressed and stakeholders (whose primary concern is chronic obstructive pulmonary disease) to be mobilised, whilst also ensuring that cross-cutting linkages are made.
However, it may not come as surprise that the NHS Commissioning Board is not applying a uniform approach to this. Responding to a damning Public Accounts Committee report on neurology services, the Department of Health and NHS Commissioning Board have argued that a neurology outcomes strategy is not needed because a long term conditions strategy is being developed (an approach which is inconsistent with that adopted for cardiovascular disease, mental health, cancer and liver disease, all of which can be long term conditions). This stance has been met with dismay by campaigners, who have good reason to be sceptical about the ability of general strategies to deliver specific benefits, given the impact of previous efforts.
Whoever gets the domain lead job would do well not to fight this desire for specific, targeted actions which – if properly constructed – can be used address weaknesses in disease pathways, whilst also testing out approaches which can then be applied to other conditions. This approach will not only deliver outcome improvements, but it will also make the person more popular, both with stakeholders and with other domain leads, who will have their own requirements from disease-specific strategies.
This is not to say that a general approach to long term conditions is not worthwhile – in fact the opposite. Where a cross-cutting approach will be required – and has been lacking to date – is in managing co-morbidities. The truth is that many patients don’t have a single disease (or even a single generic long term condition), they have multiple ones. The drive to clinical specialisation – although welcome in most respects – has made it harder to manage these multiple co-morbidities, particularly when combined with seemingly ever-shortening appointment slots in general practice. As treatments become more effective for one condition, so it becomes more likely that a patient will die – or have their life-limited – by another. This is bad for outcomes and also costs the NHS a fortune. Designing ways to manage multiple conditions without losing the benefits of clinical specialisation will be the biggest challenge for Domain 2.