Lost in the system 

“As a former cancer patient I fear getting sick again, but it’s not the disease I fear, it’s being lost in the system that scares me.”

These words are from Rachael Bull, a contributor to the latest edition of Patient Experience magazine.  We think they should be heard by healthcare providers everywhere.  Imagine being more afraid of the healthcare system than you are of cancer.

Patient experience is often thought of in terms of things like compassion and “patient-centred” care. These things matter, but both patients – and the staff looking after them – are let down when appointments are cancelled, records go astray and “pathways” that look good on paper turn out to be impossible to navigate in practice.

Another contributor - Cancer Mum - has a similar story. As a long term carer for her disabled son, she had to fight for access to his records. But she then found herself with a record containing hundreds of document and consultation entries that had not been indexed and so were useless. 

These are powerful illustrations of why we need to see things from the patient’s point of view. For healthcare professionals, an overly complex system can be exasperating. For patients, it can be life-threatening. 

So it is good to see the NHS Leadership Academy taking matters such as these seriously. Our third contributor, Karl Roberts, talks about the importance of developing patient leaders with the skills and confidence to take their experiences into senior levels of healthcare organisations.

Healthcare systems need to hear from people like Rachael and Cancer Mum. But they also need to embed individual stories in a solid base of evidence. So the magazine includes our usual round-up of the latest research on patient experience and involvement, with summaries to help you get quickly to the information you need.  

You can download the magazine via our website.
 

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Free resources

Not a subscriber to the Patient Experience Library?  Don't worry - you can still get lots of free stuff from our website!  

Our quarterly Patient Experience magazine carries insightful comment from a range of contributors, as well as our top picks of recent reports on patient experience and patient/public involvement. 

Patient Experience in England is our annual overview of the evidence base, drawing on surveys and research from government bodies, health charities and academic institutions.  The evidence is broken down into manageable chunks, and research findings are grouped under key themes for ease of understanding. 

You can browse our Knowledge Maps to see how patient experience is being reported in your area.  

And if you want to wear your patient experience heart on your sleeve, you can download and print our posters and stick them on your wall.  Better still, post them to the Chief Executive of your local NHS Trust!
  

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