Knowledge is everything when you work in the support team at a charity like the Encephalitis Society.

As much as the emails and calls are constant throughout the day, they are also incredibly varied. No two days are the same.

“My husband has just fallen ill with encephalitis. I want to know what happens next and what treatment they can expect.”

“When will my daughter be back to normal?”

“I returned to work this week and it has been a far bigger challenge than I expected.”

“I am seeing my consultant tomorrow – Is there something specific I should ask?”

Our support team has over 50 years of experience between us, but there is always something new to learn, new medical developments to absorb, or understanding the latest developments in research.

This is why visiting institutions such as the John Radcliffe Hospital, Oxford, and The National Hospital for Neurology and Neurosurgery in London (UCLH) has been so valuable to us and, by extension, the people we help on a daily basis.

Recent invitations to attend encephalitis clinics and talk to the professionals directly involved in the care of patients with encephalitis came from Asst Professor Sarosh Irani at John Radcliffe Hospital, Oxford, and Dr Michael Zandi at Queen Square, London, who led us on a tour of the laboratories, introduced us to members of the neurology team and allowed us to attend an encephalitis clinic.

Both of these visits were fascinating and, importantly, very useful for us and our work.

We saw how the professionals deal with each patient, how they consider other possible diagnoses and ensure that the patient in question has the continuity of care they need.

To see first-hand how they worked has helped us shape our support. We now have an even better understanding of what happens to a patient after the acute illness and how the doctors make decisions about referrals and treatment.

Watching the dialogue between doctors and their patients was also instructive. We now know better how the patient needs to present to doctors so they can see the full picture of the difficulties they face and which therefore should allow the doctor to make quicker decisions.

We pass on this information to the people we get enquiries from, and also add it to the information we produce. It gives patients knowledge. It eases some of the anxiety they may be feeling and makes them feel more comfortable when meeting those involved in their care. Hopefully, it creates a better and more fruitful relationship between patient and physician.

This is a just one small example of how a good relationship between a charity such as ours and health and medical professionals can be of benefit to the patient. Knowledge is everything!

*We are extremely lucky to have the support of Sarosh and his team at Oxford and to Mike and UCLH and all our other partners. Thank you to everyone at Oxford and Queen’s Square for being such gracious hosts and to all the patients who allowed us to sit in on their appointments.