"Wait times for follow ups"

I have a rare neurological condition and I have no central point of contact for any questions/ concerns in between appointments. My GP cannot help as they don't understand my condition and just tell me to contact neurology.

Follow ups are always late, even when urgent. It is extremely difficult to live with a debilitating condition that is unpredictable and to then wait months even for an urgent follow up (when told I would be seen within weeks) with deteriorating symptoms doesn't seem right. 

I really feel the department needs extra staff - completely understand the state the NHS is in, however urgent should not mean multiple months' wait with no central contact in between. Or even a specialist nurse post to be put in place to support patients like myself as GP cannot help me. It is a worrying time when you do not know what is going on with your health and you just have to wait for months to be seen.