The insights we have gathered from thousands of people over the last seven years tell us that medicines really matter to those who live with long term health issues. They say that currently they feel they have no choice about the medicines they are prescribed; that clinicians don’t listen to their concerns. It should be no surprise that they regain control by choosing not to take them.

We have found three touchpoints in the journey with medicines that have a significant emotional impact:

  • Starting a medicine. This is a life changing event for those who need to take that medicines every day for the rest of their lives. It impacts on their identity and if they have fundamentally negative beliefs about medicine consumption, it can leave them in a quandary and generate with bags of unresolved anxiety
  • Taking a medicine every day. Most people do not like the idea of taking medicines every day and will do anything to avoid it. People often intentionally stop taking medicines as a way of controlling their health issues. They often tell themselves stories about the harm medicines could be doing to reinforce this decision
  • Stopping a medicine. We know very little about what people think about stopping medicines. This is important because ‘deprescribing’ is something that we need to do more of.

Given the lack of insight into peoples’ experiences of stopping medicines, it is unsurprising that most people with multiple long term conditions end up with cupboards stuffed with a confusing array of pills and potions! Stopping is something that the NHS finds hard to do.

Stopping medicines definitely has an emotional impact on people. This week I was interviewing a gentleman who had lived with a diagnosis of diabetes for around two years. He shared with me how he had changed his lifestyle and as a result, his numbers now suggested that he no longer needed Metformin. When the practice nurse suggested stopping it and follow up in 12 months. It felt like a step too far because he was concerned that if he was not taking the medicine, his diabetes might spiral out of control and no one would know for a year. They agreed to half the dose and review in three months.

This story tells us that if we are to succeed with social movements like Choosing Wisely and if clinical pharmacists are going to have maximum impact as they join GP practice teams, we really need to understand more about how to stop medicines and do no harm.

It is certainly a topic The ELC team would like to investigate further. If you are interested in this too, do get in touch.