Keeping mum, irony and shifting capacity

It’s a tricky one, this capacity business and parenting. I deeply believe that capacity should be presumed and agree (and welcome) that “unwise or eccentric decisions don’t themselves prove lack of capacity”. I also worry that this has led to instances in which the wellbeing of learning disabled adults is compromised because “capacity” is so difficult to demonstrate in practice.

There was a roundtable discussion about Winterbourne yesterday with a range of learning disabled people (I assume/hope there were learning disabled people present), families, community groups, government ministers, policy makers and service providers. This was live tweeted by various people (see #winterbourne to follow the discussion). Families cropped up early in the discussion and there seemed to be a call to involve families rather than treat them as a problem.

winterbourneImportant, much needed discussion, but I was struck by the irony of going to visit LB with the threat of him deciding he no longer wants to see me, hanging over my head. It is quite a blast to go from being the full time carers, with very, very little support over 18 years to suddenly being removed from the equation. We have to ask for any snippet of information. The outcomes of a team meeting on Monday remain unknown to us. Again, ironically, in an attempt to not appear a batty, desperately protective mother, I didn’t ask to attend this first meeting. When the default position is the young person has capacity (without capacity being tested), the positioning of family members within the structure of the mental health service is a bit anomalous. And anomalies are odd and out of place.

Fran came round yesterday afternoon, armed with useful information from a brilliant workshop she’d been to on capacity. It was run by Luke Clements, who is an expert in this area. “He was absolutely brilliant”, she said. “Ah, him? I updated the literature review for his disabled children and the law book a few years ago. My supervisor was the co-author.” Is that ironic? I’m not sure. My research at that time was about mothers and going out in public with dudes like LB. The real irony is that LB can’t go out anymore. And my role as a mother is now contested.

It’s all about the sheep

A first. Blogging twice in one day. More photos of the sunset at Hergest Ridge. Suspect as an antidote to the indescribable cruelty learning disabled people were subjected to at Winterbourne (and elsewhere). The sheep in colour this time. Because it’s all about sheep at the end of the day.


I’m keeping this short.  I find it so upsetting I get that lump in the back of the throat thing and then tears, comparable to the recent downpours we’ve been having, start chucking it down my cheeks. Coverage of the recent independent report into the abuse of learning disabled people living at Winterbourne View care home institution by Margaret  Flynn* can be found here. We now know that there was a raft of factors (big surprise) detailed in the report that contributed to the barbaric and inhumane treatment of people who are pretty much defenceless. I won’t rehash them here, but just  quote this;

Andrew Havers, medical director of NHS Bristol, North Somerset and South Gloucestershire Primary Care Trusts, said: “Many of the systems that could have prevented the shocking abuse of patients at Winterbourne View hospital failed.

Yep. The systems failed. As they always do. And nothing changes. There will be hundreds more Winterbourne’s. Happening now and in the future. Our children, your children, future children, will be beaten, humiliated, abused, exploited, overlooked, neglected, teased, tortured and toyed with. Through systemic failure. On so many levels.

I tweeted a comment this afternoon about the fuss that was caused by the cat being chucked in the wheelie bin that time. I didn’t mean to compare human with animal abuse at all. I just wish that cases like Winterbourne produced the same level of outrage among people because until they do, I can’t see much changing.

Anyway. That’s all really. Other than I’m really learning the meaning of a heavy heart.

*Contrast this with Louise Casey’s tripe if you can be bothered.