"Damaging lack of communication by the neurology..."

Last year I had an illness which resulted in neurological issues. One of the consultants in the emergency setting recommended I be seen after a couple of months or so by a neurologist as my condition was unlikely to remit for many months, even then partially or worse not at all. I was referred and waited with no contact from neurology. I was advised to call the department and enquire how long the waiting times for an appointment were at that time. I was greeted by a very pleasant receptionist on the telephone who politely took my details. I was surprised when I was told there was no record of me on the waiting list. Being helpful they looked up my hospital record and discovered the letter of referral and beneath it a response from a consultant that I did not need to be seen. However, I had not been informed. Had I not enquired I would have been still hanging on in the hope of an appointment five months later. Eventually I asked my GP who found a response from the consultant indicating such, telling me just to carry on as normal… normal???... And to take a precautionary action, which in fact I had been doing since I had been seen in the emergency setting and if I hadn’t would likely be on my way to blindness by now!

I believe it is important to inform a patient if they are not to be seen or helped rather than letting the patient be hopeful as time passes of getting some help, unaware help is not there. Sadly for the hospital I learned that help is very definitely available and very necessary and effective for my condition, especially if offered in the early days. I did some looking online and found several hospitals elsewhere that do offer support and treatments, asked to be referred and found out I could have been seen months earlier. My discomfort and pain could indeed have been helped and is to be helped and my outcome might have been greatly improved with earlier intervention. Why, if no support for a condition is willingly offered, rationed or not available in your hospital is a patient not informed? Certainly in the emergency setting I was told such help is available. Recently I was asked where I got my support from by an emergency doctor. I said other than repeat prescriptions for drugs from my GP, nowhere. The doctor was very surprised and concerned.

I go out of the city for help soon, help I should have had months ago, help for the physical and emotional effects of a neurological life changing illness. It’s a pity the initial help by emergency staff trying to reduce the impact of the illness was not valued by the offer of some follow up advice, face to face assessment or treatment or importantly the information I found online where that package is offered. I am sad my outcome is less satisfactory because of the lame response by the neurology department to a referral and comments made in the clinic which told of the need to be seen after a couple of months. I have no hesitation in recounting my experience at the next hospital.