It’s interesting how society places a value judgement on some illnesses. If you are unlucky enough to break your leg in a fall you are likely to find people sympathising with you and there is no question that you’ll seek out treatment and benefit from everything our health service can offer.
The same is true of cancer, heart disease and almost all other physical complaints. Sometimes there is a suggestion that people are contributing to their own ill health, by smoking for instance, and there is a debate to be had about the extent to which any health service should always be there for us come what may if we are not prepared to take some responsibility for own health.
This is a difficult area, but many people argue it is not unreasonable to expect that as patients we should make some contribution to getting better or preventing recurrence. Our own Optimising Outcomes Framework takes us a little in this direction by requiring patients who choose to have non-urgent elective procedures to participate in smoking cessation and/or weight reduction programmes before we agree to list them for a procedure. This is because there is evidence that some avoidable harm can be prevented if people take these steps and that the chances of a successful outcome can be improved.
In the world of mental health there is still a fairly widespread reluctance to acknowledge that mental ill health is just as much a part of the human condition as cancer or heart disease.
People do not choose to be mentally unwell, just as people do not choose to have cancer. Yet those who suffer may go unsupported or be unable to be open about the problem – which can compound a sense of isolation that can be a part of the disease process.
It’s not their fault and very few people actually want to be unwell – but still there is judgement and with it an implied projection of moral weakness or a failure of character in the person with the problem. Ridiculous!
In the physical world there are examples of this kind of judgement being applied, although it is much less common. Here are some facts for you about a disease that suffers from this sort of prejudice. It is:
- The 8th leading cause of death
- More prevalent than any one cancer, or HIV
- Potentially lethal – two variants of this disease kill three people every minute – that’s 1.4 million in 2010 compared to 1.2 million who died from malaria.
- Often silent and people may not realise they are infected – one in three people on the planet have been exposed to the virus.
The disease is hepatitis, which is a cluster of similar viruses that attack the liver. Hepatitis C is a real menace because the body is generally unable to clear the virus itself. Four out of five people develop a chronic infection, which may then lead to cirrhosis and liver cancer after 15-30 years. If you are infected you will face many challenges as the treatment is prolonged (24, 48 or even 72 months are required) and some variants of the virus are much harder to eradicate.
There is no vaccine and so it is vital that the risk of exposure is reduced. For those who are infected this is a major responsibility they have once diagnosed as this will help to contain the spread of the disease. It is possible to spread the virus through contact with the blood or other body fluids (i.e. saliva, semen, vaginal fluid) of an infected person, although it is unlikely to be contracted through kissing or the use of cutlery.
The virus is able to live outside of the body for a relatively long time, which means that the risk of exposure from shared razors, toothbrushes or other household articles is much greater. If you are a drug user then you can be infected by using the equipment for injecting drugs (not just the needle) or by sharing a straw or note if you snort cocaine. Unsterilised tattoo or body piercing equipment is another route for infection.
Unfortunately there is a degree of stigma associated with the disease which may prevent people who believe they may have been exposed from coming forward. As a society this is very harmful, and places us at increased risk as the virus doesn’t know who we are or what we do for a living and makes no judgement about whether or not anyone deserves to be infected.
This is why Delyth Tomkinson, Brendan Healy and colleagues from across the NHS in Wales have been at a stall in the Hayes in Cardiff centre this week. Delyth and colleagues from the Welsh Hepatitis Nurse Forum have been championing the cause of promoting access to testing and treatment for this disease.
This is particularly important as there are thought to be 14,000 people with undiagnosed disease in Wales. Getting a test is simple – talk to your GP or pick up a self-referral from the cashiers desk in the concourse at UHW and our team will take care of the rest. I think Delyth and the rest of the team are great ambassadors for the health board – and their powers of persuasion are not to be underestimated – just ask the Health Minister, Mark Drakeford who agreed to be tested to show his personal commitment to the cause.
On World Hepatitis Day our team were out there sending a very clear message that prevention is better than cure; that getting tested is simple and easy to do and will reduce the chance that the disease will spread by ensuring people who are infected know they are and so can ensure they protect those around them and of course get the treatment that may eradicate the virus for them.
If putting a value judgement on a virus isn’t nonsensical enough, the consequence of allowing stigma to persist is that those who like to judge are putting themselves and their families at greater risk by creating a climate where the very thing that would protect us all is less likely to happen.
I’d like to think that those of us who work at the health board believe we should never fail to challenge prejudice of any kind. Making value judgements about the health challenges people face is a world apart from a mature conversation between a health care professional and the patient about what they can do to help themselves.