It gets better

[sleepless68]

Hi having had Encep in Oct 2020 in Ne England I have still not been reviewed by neurologist.My gp referred me in May.Informed today they turned me down as open to Opthamology re eye issues so won t adress other issues until they ve closed.Is the postcode lottery again or does evrryone just get sidelined?

[Ocean96]

Hi there,

Thank you for sharing your story with us. We all understand and I’m sure we have all been through similar experiences with encephalitis.

I personally have been forgotten about once I got discharged from hospital. Thankfully I had a very supportive family however it was still very difficult. I really had to fight for every bit of support I got. The encephalitis society have been such an amazing resource to me and I recommend them so highly: encephalitis.info/support

All I can say from my experience is keep calling and keep asking for the help!

[Paula-38 in reply to Ocean96]

They have been marvellous to me since I first phoned them in late 2018 but they were not out in the early days after my diagnosis of encephalitis nor during my childhood days which were the worst for me.

I mean having to wait 40 + years to get access to help was absolutely appalling disgusting etc so I somehow just had to get on with life the best I could. I had no idea what so-called normal was I think life with Encephalitis was my "norm" because I didn't know any different and nobody knew what was wrong with me.