Victory - sort of

I should be pleased. I should be happy. After a closely argued letter and a few robust phone calls, CQC has agreed that their registration applies to the service not the location. So our service provider will not be acting illegally by sending nurses to our home or into hospital to help with our son's care. Great we won - didn't we. Well yes, but the battle did a lot of damage. We had a close co-operative and mutually supportive relationship with our service provider. We operated in a climate of mutual trust, and the flexibility this allowed was one of the things that made his care package work so well.

It's not quite the same now. Some of the closeness, informality and humanity has gone and 'nursing by numbers' now seems to be more important than making our sons life as fulfilled as it can be. The wedge driven in by the first CQC decision created a rift that's going to take a long time to heal even though the wedge has been removed. We'll get the nursing care at home - but it feels more grudgingly given now. He'll get his dedicated nurses in hospital - but I doubt it will be as fulsome as it was. They will send nurses here when he's ill - but whether they'll try as hard to fill all the shifts, I don't know.

This has taken it's toll. We won, but at a high cost. We feel depressed and rejected by the experience and we're already having to work harder to make sure our son gets the social outings they used to initiate. What's changed is the background fear that they'll be 'breaking the rules' if they depart from the written protocols at all - even when it's obviously in his best interest. Care shouldn't be like this. The rules shouldn't get in the way of the humanity.

We will rebuild it - we just shouldn't have to.