We've just had a meeting with one of the care provider agencies. Got a phone call on Friday telling us that although we'd been operating the service ina particular way for years, because CSCI(Commission for Social Care Inspection) has been replaced by CQC (Care Quality Commission), the service needs re-registering and lo and behold - it doesn't fit the tick box categories so one bit of it could be 'illegal'. To be fair, my son's package is complicated - but so is his disability. We're lucky that our service provider has worked closely with us to develop a very PCP (Person Centred Planning) care package - the trouble is that the commissioning, registration and inspection organisations don't really understand (and often don't care) about real people's needs as they don't fit the 'one size fits all' tickbox exercises they rely on. So next stop - meeting with CQC and others. My son will be there so they can see what they are talking about. I don't want to redesign his service to fit the inspection regime but that's the way we're being pushed - please don't get me started on 'Personalisation' - I'll do a rant on that later.
Just to illustrate the complexity - we have a 'shared care arrangement' with one provider doing day care, another doing his residential (he's a one person nursing home in a 4 person registered care home -he has 24/7 nurses when not with us), and we provide the rest (some of the care time and lots of other stuff e.g. equipment, drug oversight, care protocol negotiation etc.) His complex care needs include feeding regime (gastrostomy protocols), medication organisation, protocols, interventions, MAR (don't know what MAR stands for! - administering drugs) sheets, regular and PRN (latin for as needed) drugs, motorised wheelchair, very techy seating system, specialist physio, epilepsy and asthma guidelines, end of life care plan, communications passport (non verbal), traffic light sheets (for hospital admission), occasional oxygen, his own wheelchair adapted vehicle, special footwear etc. etc. Despite this he lives in the community and enjoys life.