"Appointments with Neurologist and level of care."

In a response to a previous story entitled Neurology Outpatients, you wrote that "Every patient that uses our services should be fully involved in their care, which means being listened to." This was also not what I experienced when dealing with the Neurologist.

I was diagnosed with a neurological impairment HSP by a Geneticist just before I was scheduled for a follow-up appointment at neurology to discuss MRI scans, however as the diagnosis had been made, I assumed the appointment would be to elaborate on this and offer advice, support or just start to answer my questions on the matter. It didn't work out that way.

For starters, the appointment lasted a total of 9 minutes start to finish, which is surprising as my brother also has this condition, howver he was diagnosed and treated in South Wales and when he was diagnosed, his appointment with his Neurologist lasted for well over an hour and he felt and still feels fully supported.The doctor was also very blunt and dismissive, advising it would be better if I dealt with a Neurological Rehab team instead of seeing them again as there was little they could do for me.  I was left feeling like I was wasting the doctor's time and that they couldn't wait to get rid of me. Even now I'm still completely ignorant of how this genetic deficiency would impact and limit the rest of my life. This alone is a shameful way to treat someone with life changing news, although if I had been referred to a neurological rehab team then at least I would get support from elsewhere in the NHS. The fact is that no such referral was made. I followed up the Rehab team myself yesterday (which is almost a month since my last Neurology appointment) and discovered that no referral had been made for me. So they neglected to provide any level of care to speak of and also prevented me from getting any from elsewhere by neglecting to send a referral for me.

I've spoken to my GP about this who was very passionate in his response, that I had seen without being told and stated that the problem is widespread and goes to the highest level of hospital management and their implementation of part time locum consultants. Based on this, I have an appointment booked with my local MSP to investigate and identify the problem, then make sure your staff never treat someone like I was treated ever again.