Steve Wardlaw, Chairman, Emerald Life Limited, and Professor Richard Ashcroft, Professor of Bioethics, Queen Mary University
The LGBT community in the UK is feeling unsettled as of late. Not just because of events overseas, particularly in Orlando, or the continued execution of gay teenagers in Iran, which highlight the global persecution of our community, but because of the invidious change of language that we have seen in recent months. When Nigel Farage refers to ‘normal, decent’ people, and Andrea Leadsom’s supporters use phrases such as the ‘decent people’ of this country, you can be sure of one thing; they are not including LGBT citizens in these groupings. For those who lived through the late 1980s and early 1990s, such language is deliberately reminiscent of the Tory government’s pronouncements about ‘pretend family relationships’ and ‘normal families’, sentiments that were meant to disempower entire sections of the community by the use of negative or belittling language.
We should all understand that language has the power to undermine, not just directly, but through the use of underlying assumptions. This is particularly the case with stereotypes about minorities. The power of assumptions – that black men are criminals, for example, or that gay men are sexually promiscuous – lies in their ability to be communicated without expressly being said. This allows for plausible deniability should a speaker be forced to backtrack.
At the very least, we should be entitled to expect the Government, and state bodies, not to descend into moral judgments using such stereotypical assumptions. This would particularly be so with the NHS, where life-altering decisions are made on a daily basis and where the NHS has the duty to ensure the provision of health services to the entirety of the population equally under the National Health Service Act 2006.
It was therefore extremely disappointing to see the use of language by NHS England in its press release of from 2 August 2016 responding to the recent court judgment on PrEP in which Justice Green ruled that the NHS could fund PrEP treatment, noting in very clear language that the NHS England case was of little or no merit. The headline of this press release is worth citing:
“PrEP is a measure to prevent HIV transmission, particularly for men who have high risk condomless sex with multiple male partners.”
Seemingly innocuous and fact-based? Not really. This satisfies the criteria of dark propaganda in two ways. Firstly, it reinforces an underlying assumption about the behaviour of gay men; this could almost be read as a definition of gay men generally rather than some and ignores similar behaviours in the straight community. Secondly, it highlights the use of PrEP by only one group. It does not mention those who may benefit from PrEP having acquired HIV through accidental infection, for example, or children of HIV positive parents or sero-discordant couples (where only one partner is HIV+). It also avoids charges of racism by not mentioning HIV infection in the black community.
And it is not just the NHS that has form on this:
NICE is the body charged with advising the NHS and social care organisations on how to “reduce variation in the availability and quality of NHS treatments and care” and developing public health guidance to “prevent ill health and promote healthy lifestyles”. (Quotes are taken from NICE’s official website). One of the key reasons it was established was to overcome postcode rationing of assisted conception services. There was a history of denying IVF and other treatments to people judged by local NHS decision-makers as morally problematic. When NICE issued guidance on IVF in 2004, it explicitly excluded “non-medical infertility” from consideration. This is a form of indirect discrimination, in that it adversely affects one group over another, in this case effectively excluding same-sex couples. Although the original guideline has been updated and replaced several times, the basis has not changed. Yet the guideline is supposedly value-neutral and “evidence-based”. NHS bodies can point to it and argue that they will only fund in line with NICE guidance. Sometimes silence can be exclusionary as much as explicit discrimination. Sometimes it’s quite… convenient. This indirect discrimination is the basis for many claims under the UK’s equality legislation, and yet in occurs all too often in clinical decision-making.
While every spending decision that the NHS makes is based on a value judgment, such judgment should be made simply on the grounds of clinical effectiveness and hard data as to cost efficiencies – both areas where the use of PrEP has shown itself to have met those qualifications. In times of austerity, the NHS needs to base its hard decisions on facts, not on thinly-veiled prejudice that directly engenders the vitriolic language that we then saw in the following day’s Daily Mail about PrEP as a ‘gay lifestyle drug’.
In times of national and global uncertainty when we have seen an increase in hate crime and intolerant speech, it is vital for the Government and its bodies to use neutral and fact-based language so as not to fan those flames. The NHS has an obligation to offer service to all and to reduce inequality. As part of that obligation it needs to mind how it refers to all parts of society. Inflammatory language such as that recently used in the PrEP debate is careless at best and grossly intolerant at worst. Those leading the NHS need to be emphatic that such language must not be tolerated as it gives rise to the ‘acceptable intolerance that we have seen in recent weeks. The NHS must look to why it was founded, and strive harder to meet its purpose.
This article was written in August, but we are publishing it now given the evidence from BuzzFeed under a Freedom of Information request that the ‘offending’ language used by the NHS was not in the first draft statement. Given that there are clearly further questions to be raised, we are adding it to our blog as it continues to have current relevance.