I come from a long line of cat owners and lovers. I am the granddaughter, daughter and mother of cat lovers and I’m one myself. However, my grandmother had an expression she was extremely fond of using; “There’s more than one way to skin a cat”. On my way back from my meeting with the CQC yesterday I realised that this was exactly what we’d been doing.
We’d been skinning cats.
When Andrea Sutcliffe (Chief Inspector of Adult Social Care) invited me to go to London and meet with her to discuss my on-going blogs about the “Holes in the Net”; about the 27,000 odd people in Supported Living Homes who did not fall under the inspections of the CQC, I think my first reaction was shock. At no point did it occur to me to be nervous or that her invitation wasn’t for real. I thought I would be going there just to listen. Everyone who knows me pointed out how highly unlikely that was. They were right, but I did do some listening and they did some too.
The tone for the meeting was set by the huge, warm and genuine hug which Andrea used to greet me. It was like meeting a friend you hadn’t seen for a while. On the way to the meeting room she explained that we’d be joined by a couple of others. Those others were Frances Smethurst (Head of Social Care Policy) and a bloke who was going to sit opposite me.
Perhaps he thought my customary greeting to strange men was “Oh my god, it’s you – that’s just too weird! I’ve just been writing about you” as I sat opposite Jonathon Beebee (Learning Disability Policy Manager). Never having met this bloke before or really even thought about him, I had specifically mentioned him in one of the “anecdotal evidence” stories I’d taken there to show the meeting.
Andrea thought I was there mainly to talk about Nico and our experience of his death while living in Supported Care. I explained that while I would be mentioning him – mainly because his was the case I knew best, what I was really there to talk about was the hundreds and thousands of desperately concerned parents and family members who had no voice of their own in that meeting. I was there to be their voice.
It was plain that everyone in that meeting wanted the same thing – to get it right. To prevent needless worry, suffering and death. Everyone knew what the problems were, but we were there to see if we could come up with solutions.
I began by sharing round the typed sheets I’d brought with me – the “anecdotal evidence”, the stories of Supported Living Homes shared by concerned parents. The majority of parents who had shared their stories with me didn’t want to be identified by name in the documents I took with me, but their stories had a lot of impact. I told the meeting that I could have brought them even more stories, but some people who had contacted me just felt they weren’t able to share as they were too intimidated by the care providers. But that too told its own sad story. We went through the stories a little bit and I left them there for everyone to re-read and think about in their own time.
I’d like to thank everyone who contributed their own story to that list. They made very powerful reading and helped very much to focus everyone on why getting this right mattered so very much.
We got down to business. Jonathon talked about the really well-run Supported Living Homes he’s been to. It can be done well but we all agreed that good stuff is top down and it starts with great management. The words “Supported Living” don’t have to necessarily mean “poor care” but often they do as without much carrot and naff all in the way of stick, there’s just not enough incentive for them to get it right.
The problems are varied but mostly stem from the single fact that Supported Living Homes are also “private” homes. Each person’s housing benefit pays their rent. The landlord is often not the care provider anyway. But because everyone’s paying rent they have the same rights under law as any other private tenant and this means that the CQC have no automatic right to go into their homes uninvited, even if it’s to inspect them. There’s no way around this one. To try to change the law so that some private tenants are categorised differently to others only makes a different set of problems and frankly, a change of this type would use up so much time – time we don’t have spare.
As I said in the meeting “right now as we’re sitting here, somewhere in a Supported Living Home and maybe in more than one, someone is being bullied, someone is being abused, threatened, having their fingers bent back or dropped into a bath of scalding water. Someone is crying out for help that never comes. More deaths just waiting to happen. We haven’t got time to waste. Someone could die while we sit in this room. Someone could die tonight. We have to act NOW”.
Frances explained that the CQC is already making it harder, legally far more difficult and complicated, for a registered care home to just turn itself into a Supported Living Home. The reason that a registered care home might want to change themselves into Supported Living Homes is the benefits issue. As the government cuts back and back on disability benefits some of these registered homes are looking for other revenue streams. If everyone living there pays their rent by their housing benefit then that’s a guaranteed revenue stream that’s unlikely to be cut. But as soon as they change over, that means that the annual CQC inspected just stops. And it’s not replaced and no-one is keeping an eye on that new Supported Living Home or dealing with whatever other changes might happen there in terms of care or how that care is applied.
But personal care is regulated. And this is the big thing – this is where serious cat skinning (again apologies to every moggie in the land) can begin.
So while the tenants of a Supported Living Home have “Domiciliary Care” (i.e. they live there, sleep there and their care is there) in a “private home” (so can’t just automatically be inspected annually by the CQC) the care they receive can be scrutinised by the CQC.
If a parent or family member has a concern about the care their child, brother, sister, niece or nephew is receiving in that Supported Living Home – regardless of their status of it being their private home, they can report their concerns to the CQC.
The CQC will then contact the Supported Living Home and discuss this with them and if they feel it’s applicable and appropriate, they will ask if they can visit, to look into this further.
Obviously the home could refuse to allow the CQC to visit. But let’s face it, that would look pretty bad wouldn’t it? If they did that the CQC would refer the matter to the local adult safeguarding department and in fact they might do that anyway – depending on the nature of the complaint.
So this is how it works. You’re unhappy about the care at the Supported Living Home. You contact the CQC and you tell them about it. They will then act on your complaint. It might mean a visit, it might mean a letter. It might mean that they cut the top of a can of worms and bring that right into the light of day. It might even save a life.
In an ideal world the onus shouldn’t fall on the parents/family to have to go to the CQC to get the ball rolling, but we sure as hell don’t live in an ideal world. What matters most of all is that we break down that culture of anonymous disabled people, hidden away behind high walls, where anything can be done to them and no-one even knows.
The best persuasion is a little bit of carrot and a little bit of stick. But sometimes you have to have just a little bit of extra stick. If you knew that the CQC were going to investigate any unresolved problems that the family had with their child/sibling in your care, wouldn’t you try just a little bit harder to get it right?
So the next thing we’re going to be working on is putting together a really straightforward, easy to understand and easy to act on, version of how to contact the CQC if you have a concern with care in a Supported Living Home. Then we need to make sure that every single family who needs one, has one. It will take a little while to get this ready and out there and I’m going to be involved. If I can understand it, so can other families. This will take a while – it won’t be overnight or even in a few weeks. Then we need to think of ways to make sure everyone has access to this. It’s quite a big ask. It’s quite a big cat we’re skinning.
But if we can get this right it might save a life. It might keep one more Nico here with us safe and still in the world. And that’s just everything to me.