Actions speak louder than words, or so they say. On 2 May, the Secretary of State for Health and Social Care came to the House of Commons to deliver in person an urgent statement on issues in the national breast cancer screening programme that may have shortened the lives of 135 to 270 women over a nine-year period.
Six days later on 8 May, the Secretary of State left the chamber before his junior minister responded to an urgent question about the first annual report of the Learning Disabilities Mortality Review Programme (the LeDeR report), which highlighted that in 13 of the 103 deaths reviewed so far – less than 10% of the more than 1,300 individual cases notified to the review in its first 17 months – people had received care that had adversely affected their health.
Media coverage of the two reports was similarly varied. The issues with the breast screening were front page stories in most newspapers, and came high up the broadcast and web-based news reports. In contrast, coverage of the LeDeR report was far less prominent.
For those individuals with mild to moderate learning disabilities whose deaths were notified to the LeDeR programme, median life expectancy was around 20 years less than the general population, and over 40 years less for people with profound multiple disabilities. We know that the average life expectancy for people with severe mental illness is 10 to 20 years less than the average for other adults.
The deaths of people with a learning disability, or who experience severe mental illness, appear to hold less significance for our most senior leaders than the deaths of others. Is that a fair statement to make, and what might lie behind that perception?
In the years since the closure of long-stay hospitals, much effort has rightly gone into addressing the stigma attached to both mental illness and learning disability. In the case of learning disability in particular, there has been a concerted effort to remind professionals that learning disabilities are not in themselves medical issues.
But the fact remains that many people with learning disabilities or who experience mental illness do also have conditions that affect their physical health, and many reports over the years have highlighted the inadequacy of health services in meeting those physical health needs. The LeDeR report itself referenced Mencap’s 2007 Death by indifference report and the following year’s Healthcare for all response by the Department of Health.
It’s also worth noting that the latest figures by Health Education England show that the numbers of learning disability nurses – part of whose role is to bridge this gap – have reduced by 36 per cent in the last five years, with vacancy levels at 16.5 per cent. Worse still, since the abolition of nursing bursaries there has been a dramatic fall in those applying to train in the field, with half of all courses now at risk of closure, thus increasing the risk that inequities will continue.
The concept of ‘diagnostic overshadowing’ can be defined as “the misattribution of physical illness signs and symptoms to concurrent mental disorders, leading to under-diagnosis and mistreatment of the physical conditions.” Perhaps we also experience ‘policy overshadowing’ – a tendency to focus time and energy on those issues and policies that are likely to be seen as a high priority by the wider public, at the expense of lower profile or less popular priorities that nevertheless impact significantly on many individuals and families.
Treating everyone the same won’t do it
That is not to say that the level of coverage given to the breast screening issues was wrong, or that we don’t need to maintain a focus on quality and access standards for physical health services.
Indeed, at least in theory, achieving those standards should benefit people with learning disabilities and mental health conditions as much as anyone else. But it isn’t enough. Time and again, experience has shown us that equality in access to services – treating everyone in the same way – does not deliver equity of outcome, as this cartoon (well known in many versions, with this from an Inclusion Solution blog) illustrates.
Source: The Second Line Education Blog
As the author Caroline Belden says: “Working towards equity and not just equality requires acknowledging this discrepancy, and seeing another person and their situation clearly enough to understand that what works for one does not work for all. It begins with understanding that there are some in our society who have yet to be seen, and not for lack of trying nor for lack of worth.”
Words are not enough: leaders must act
I have no doubt that when asked to discuss the LeDeR report our senior leaders will express their concern, and that ‘something must be done’. Which begs the question of why something has not yet been done. What will it take for health service leaders to act on what is after all a legal requirement in line with the Disability Discrimination Act, and once and for all put in place systems that actively ensure that services meet the needs of all individuals who use them?
It may be a cliché to say that ‘what gets measured gets done’, but it has also been a reality of life in the NHS for many years. Perhaps we need to move away from a focus on equality in the input measures we use to rate our performance, and think more about measures that show we are achieving equity in outcomes for individuals. STPs after all were established to improve the outcomes for their local populations, and yet the STP performance dashboard so far has no indicators at all that address the issue of equity of outcome for different groups of service users.
Only when that is a part of every performance conversation, every strategic planning discussion and every political mandate are we likely to see change.
Buckingham H (2018) "Equity of outcomes: why we must do better", Nuffield Trust comment. https://www.nuffieldtrust.org.uk/news-item/equity-of-outcomes-why-we-must-do-better