Just thought this may help newbies and also give us all some helpful advice....
So here's mine
1) get the GP to refer the patient to the local hospice ASAP they are NOT just there for end of life care and their support is second to none
2) do NOT take crap off anyone (i.e. All the so called professionals) they'll have you running round in circles if you let them
3) start the process for chc (continuing healthcare) refer to www.caretobediffernt for more advice or ask us!
4) ask the GP for a referral to the neuro team they include physios, speech therapists, dieticians and continence nurses/specialists
5) be patient with your patient! Life is now s**t for them and I mean total s**t but we must be their rocks, if we don't who else will?!!!