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NHS England - Transformation Directorate

Why joined up care matters: a patient perspective

David Snelson has multiple chronic conditions and is regularly monitored by his GP. He is also seen by his consultant in a neighbouring hospital where he takes his iPad to the appointment. He uses the NHS App to show his consultant his latest blood tests and other results, allowing them to see any trends and useful information that is required for his consultation, as the hospital is unable to access these results directly.

David recently had a medical emergency where he had to seek medical advice from NHS 111. Without access to his medical records, this could potentially have led to a serious misdiagnosis.

He is a use My data member, a movement of patients, relatives and carers, harnessing the patient voice to build confidence in the use of patient data to save lives and improve outcomes.

Why health and care data matters - Rhys Hancock and David Snelson

David says:

“One evening, I suddenly developed pressure, pain and light sensitivity in my left eye, which led me to call NHS 111. I was triaged and the doctor called me at 1am went through my symptoms and diagnosed glaucoma. At the time I asked whether he had checked my patient record as that had all my conditions and medication, but his response was that they were discouraged from doing so because of data protection and concerns that someone may look over his shoulder. He also added that they had limited access to my records anyway, so he didn’t feel the need to check.

“Literally five minutes after our conversation, he rang back and said he had looked at the limited patient information and seen on my record that two years ago I had had shingles with ophthalmic complications. He wanted to check in which eye I was now experiencing pressure and pain because if it was the same eye as two years’ ago then it could be a much more serious condition, and a medical emergency. The doctor was relieved when I confirmed that it was the other eye this time round.

“This experience really reinforced that data should be available to all clinicians in all settings, and I was troubled that I could have been seriously misdiagnosed. Worse still, a serious medical emergency could have been missed, with dire consequences.

“The fact that medical records cannot always be seen or shared in different health and care settings is hugely concerning and frustrating for me. What if I happened to have an accident somewhere in the country and could not articulate my medical conditions and medication? What would happen then? I wouldn’t be able to get the critical care that I would need. For example, one of my conditions is primary adrenal insufficiency, which means my adrenal glands do not work and I have to take hydrocortisone and fludrocortisone to replace what my body doesn’t produce. In an emergency, Addison’s sufferers often need an emergency injection of hydroctonise, but if I wasn’t able to articulate that, how would medics know what was the appropriate treatment for me? In that situation, they would only have a limited amount of time to treat me before my condition became serious or even fatal.

“I feel incredibly passionate about data sharing and the fact that my patient records should be available to all clinicians in every health and care setting around the country. The closer we get to sharing patient data more widely and joining up care, the better for all of us, especially those of us with underlying medical conditions who are at higher risk. Let’s not put people’s lives at risk.”