Late presentation and screening

I saw Mrs A yesterday for a follow up. A sprightly, lovely lady in her late 80s, amazingly still working as a housekeeper until a few years ago. For several years I meet her once a year to check her blood pressure and swap stories about local events. Four weeks ago a friend brought her to me, in a bit of a panic, after she disclosed that a large breast lump she had had started bleeding through the skin. She’d had it for 2 years, and if I’m right, she must have had it the year before when I last saw her but not mentioned it*. 

As health professionals (and if we are honest the media and wider society), we spend most of our focus on the people who come to see us. Stories about services being overwhelmed and waiting times are increasing. These are all massive problems, but I think we should be spending a lot more effort on thinking about the people who don’t come and see us.

 This includes those like Mrs A presenting late with a serious illness, but also includes those who ‘didn’t want to bother you’. Some people make an appointment after a few hours of a cold, others hold off for days hoping their chest pain goes away . 

These differences don’t just apply to making appointments to deal with a new problem. They also go all the way through how people use the health services, from managing chronic diseases, to taking medications, to taking up health screening. 

Health screening includes; breast cancer, cervical cancer, bowel cancer, aortic aneurysm, and more (saving around 11,300 lives per year in the UK). We know that certain groups take up screening less, leaving them more at risk of poor health in the future. Those groups include people living in poorer areas, disabled people, BAME people and interestingly men in general. The problem is even worse than this, as those groups most likely to suffer from the diseases are also those least likely to take up screening. This pattern extends to most healthcare, with the exception of emergency care. 

The question therefore we need to be asking is: ‘Why does this happen?’

Mrs A finds it hard to explain the reasons. She feels very embarrassed about coming late, and there is a hint of shame about how she thinks of the problem. Patients who present late with cancers often talk in a similar way, they delay coming as afraid of the consequences. They often remember a previous world where a diagnosis of cancer was a death sentence, and a trip to the doctor or the hospital may have been the last time they saw a loved one. Once they delay, they then feel they can’t admit they haven’t come earlier. As time goes on they find it harder and harder to admit it, and slip into a form of denial. Common factors for this are social isolation, poor ‘health literacy’, and belonging to one of the groups above who are generally disadvantaged in life, and therefore shockingly in illness as well. 

As a society we need to reverse this situation, and make sure those most in need access health care early. To do this we need to understand what the problems are. We need to do more to support those groups who under use health care and break down the barriers, the fears, and improve the understanding and knowledge about health in those groups. 

We need to keep asking why; and listen to those answers. 

When I sat down with Mrs A I explained the problem was actually potentially treatable; no-one was going to do anything against her wishes; and reassured her that she wasn’t going to be told off. Her relief was visible, she went home feeling a lot better than she had for the last two years. 

For her follow up, she looked in great health and there was improvement in the size even before surgery. With a bit of luck we can soon get back to chatting about the local personalities…