WE’VE recently completed a pilot project offering medicines training to groups of people with long term conditions. This involved group work followed by patient led one-to one medicines reviews looking at their own medicines in detail.
By the time we meet for the one-to one sessions we had established a degree of trust. The sessions are ‘patient led’ meaning we (clinicians) allow people to tell their story. We keep no notes, and give the participants a take away list of things to ask their prescribers. People are then able to talk about borrowing medicines, buying medicines over the internet, alternatives they use or have tried, finding trusted sources of information, adjusting the doses, experimenting etc…
It’s helping us help people who can be given the horrid label of being ‘intentionally non-adherent’. Something which most adherence services and products don’t come near tackling.
I believe this type of approach stands to benefit people, can save clinical time and reduce unnecessary costs. Possibly as much, if not more, than formal approaches and fancy compliance aids.
Here’s some patient stories which show how us clinicians can miss things when maybe we try too hard to be rational, structured and formal.
These are all fictitious but based on real events:
Alison’s long wait
Alison is a 40 year old woman who has, for a long time, been concerned about excessively heavy periods, and always noticed problems stopping the bleeding if she cut herself. She thought this was just the ‘way I am’, and put up with it, although it did worry her. Recently she found out that a close relative had discovered she had a treatable clotting disorder when she went in for an operation and the bleeding was worse than expected. Armed with this information, and some internet research, Alison went to her doctor to enquire if she might have this illness too.
Alison suffers from a mental illness and takes several longstanding medicines for this. Her doctor listened, but then dismissed her concerns asking her if she was ‘trying to collect illnesses?’ She wasn’t happy about this so, with encouragement from her family, and help from her community nurse, Alison was referred to a specialist. Here she found out she did indeed have a clotting disorder, which was easily treatable with medication. She was relieved, but also annoyed with her GP, realising she had suffered unnecessarily for many years and that this had not helped her mental state.
Ian is a 35 year old man diagnosed with bipolar disorder. When Ian moved to another part of the country he was allocated a new community psychiatric nurse (CPN) and, as he was unwell at the time, was re-started on medication. Over the next 18 months Ian’s condition improved so his CPN reported a ‘good response to the medication’. It was only after 2 years of knowing him that Ian confided in his CPN that he didn’t take the medication consistently, and never had.
The medicine was lithium, which requires regular blood tests. This is because too much of it is toxic and too little has no effect. Ian revealed that he had only taken it before his blood test days, then always stopped taking it in between.
Ian’s medical notes had stated that he always ‘responded well to lithium’! As a result of Ian being able to trust his CPN, and let on that he wasn’t taking it, his medical records were corrected to say that he did not want to be prescribed lithium, confirming that other options worked much better. These options include some medicines which he had previously ‘borrowed’ from someone else, or bought on the internet. Of course he didn’t tell medical staff about this at the time.
So his choice is now clearly written up, should he become unwell again.
Steve Turner is managing director of Care Right Now, a healthcare social enterprise company based in Truro
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