PSC Support writes to Chief Medical Officer
In November 2012, Professor Dame Sally Davies, Chief Medical Officer, published the first of her annual reports ‘On the State of Public’s Health’.
"Liver disease has emerged as a key theme from international comparisons which show that this is the only major cause of mortality and morbidity which is on the increase in England whilst decreasing among our European neighbours.
Among the causes of the increasing numbers of people with liver disease are
- undiagnosed hepatitis infection, and increasingly,
- harmful alcohol use.
These causes are all preventable but the individual’s role in responding to the threat of liver disease is often undermined by the fact that it progresses unnoticed for many years. Liver disease does not manifest with obvious symptoms or signs until a relatively late stage. Preventative measures should involve a combination of public health policy initiatives (action on obesity and harmful alcohol use) and better awareness amongst the public of their liver health. Equally important, service providers should continue to improve their efforts to detect early signs of liver disease. This will entail appropriate risk assessment strategies in their populations, and use of appropriate tests to identify liver disease that can be reversed or treated. These measures need to be integrated across all aspects of service provision for optimum efficacy but in particular, a proactive approach needs to be adopted so that we reduce presentations at a late stage of disease."
We were pleased to see the focus on liver disease and the need for better ‘liver health’ education of the public. However, we felt compelled to contact Dame Sally, because while highlighting the need for better services and education for the public in terms of preventing liver disease is important, we were concerned that the report failed to balance the impact of lifestyle choice on liver health against liver diseases that have no association with lifestyle choice, like PSC. Although we believe the report was accurate, we believe the wording gave the impression that liver disease is preventable. The wording risked shaping the media and consequently the layperson’s perception of liver disease as being generally self-inflicted. Indeed, we saw media reports in the subsequent days linking liver disease with alcohol.
In our letter, we explained that many members of PSC Support had experienced the undeserved stigma that liver disease brings, often having to justify how their health issues are not caused by alcohol or obesity. Whilst this is distressing for the individuals concerned, we were concerned that the broader consequence of stigmatising liver disease may cause a reduction in charitable donations, and perhaps more importantly, may risk alienating potential organ donation registrations at a time when livers for transplant are already scarce. We believe that Dame Sally Davies had missed the opportunity to present a truly holistic and inclusive picture of liver health in our country.
"It is clear to see from recent media coverage on this issue, that the Chief Medical Officer does have a significant public platform, which can shape opinion. PSC Support urged Dame Sally to consider how her future public communications could be used not only to promote liver health through positive lifestyle choices, but also support the many thousands of sufferers who have a liver disease through no fault of their own." Martine Walmsley
Martine Walmsley, 26 November 2012