Small candles and candy crush

I had a conversation this morning about the Winterbourne View Joint Improvement Programme and proposed changes to learning disability provision in Oxfordshire. I have a bit of a problem with both endeavours. The first because it ain’t really achieved anything and the second because I suspect it won’t.

I won’t say much about the Winterbourne gig other than, yes, it’s good that the ex-patients are being well looked after by the Improving Lives Team (small candles, I was told, that are important). But there are an unknown number of dudes who have (and probably are) experiencing abuse or neglect in these hellholes (and in other spaces) without any attention or apparent reflection. Getting people out of inpatient units is the priority for the Winterbourne programme but there seems little or no reflection or consideration about the impact of the experience for those people who have stayed in them.

LB’s mate James, for example. Despite the authorities knowing about what happened to him in a unit in Norwich where he spent six months of his mid teens, he and his family were offered no support to help him recover (if that’s possible) from such brutal NHS inflicted treatment (not treatment in the medical sense). And his parents have got nowhere in trying to get some sort of accountability for James’ experiences in the unit. How can this be?

A random thought I had in the nine months since LB died was that James, and LB’s other peers, would get a bit of a gold plated service in Oxfordshire to get em through transition and hopefully set up in better spaces. A fit and healthy young man dying (dying???) as an outcome of completely shite provision would shake up the relevant bods/organisations to look lively and do their jobs properly.

This was so off the scale of naivety I wonder what the fuck I was thinking. Particularly given that LB’s death didn’t spark any ‘action/change’ in the unit for 8/9 weeks till the CQC pitched up. The Sloves and others really don’t have a clue how completely crap they are. James’ transition meetings in the past few months have been singularly and shockingly poor.

I dipped into an old favourite book earlier; Charles Lemert’s Social Things. He says in the now dated edition I have that ‘the oppressed are better practical sociologists and, possibly, the only ones truly awake to the social world’. Yep. I hear practical sociologists all the time in the form of dudes, family members and carers talking complete sense about how things are. And what’s wrong/what needs to change. I talked to Pat again earlier today. She’s now 83 and still fighting to try and get her son proper support. After sixty odd years. Sixty years???

There’s a malaise in the structure and culture of services. No one really has an inkling of what ‘good’ looks like and crap (or worse) is the default position. Not crap through any intent (necessarily) but crap through a complete lack of recognition that dudes like LB and James are young people. With their whole lives ahead of them. Same as the sons and daughters of the myriad professionals who work in health and social care. But. Of course. They ain’t to those professionals.

A draft project brief for changing services in Oxfordshire has been produced by NHS England, again, probably with good intent. I can’t understand a word of it. It’s just a tumble of jargon and nonsense; ‘pathways’, ‘quality’, ‘deliverables’, ‘interfaces’ and ‘dependencies’… Complete gibberish. We’re talking real people, with real lives (well other than LB of course) and families/carers. This isn’t only dehumanising and distancing language, it’s also stifling and blinking boring. Where’s the innovation, the creativity, the engagement, the celebration, the aspiration? Why, in the professional sphere, are the lives of learning disabled people so fucking cloaked in shite?

I’m a candy crush hound at the moment. I started playing it the week before LB went into the unit and I find it distracting, absorbing at a superficial level and enjoyable. I’m at a level (won’t say which one as I don’t want to incite envy or ridicule) in which a party popper comes out and blasts away the whole board of candies. Every time it happens (because I’m stuck at this level) I think about how this is what’s needed. The whole fabric of learning disability provision in health and social care needs to be blasted away. And replaced with a fresh and flexible system led by the practical sociologists – the dudes, families and carers – who actually understand. And recognise.

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3 thoughts on “Small candles and candy crush

  1. Hmmmm not payed Candy Crush but that sounds like a good plan! Who knows, by the time #107Days is up the plan might just be well underway! Xxx

  2. With you and LB all the way I have often felt my daughter and I were in a minority feeling so completely let down by the so called “care system”. All the talk about choice personalisation living the life “you” choose and living with who you choose etc sounds great it also looks great on a web page and in glossy brochures by who ever is promising to manage your DP however they may deliver in a few cases but I have seen shocking examples of broken promises lack of creativity poor management choice is about being “minded” and watching tv your choice of programme is that of the support worker. What do you like to eat? How do you like boiled chicken and pasta cold baked beans because that’s all I can cook. May be some fried tinned salmon with a few vegetables kept warm on the hob for about 30 minutes should be lovely. All first aid and food hygiene boxes ticked might even have done an epilepsy training course and able to administer rescue medication a must since the NICE guidelines have finally been taken on board by Southern Health and the death of a young resident as a result of epilepsy where my daughter lives. However probably never witnessed a tonic clonic fit and no understanding of how epilepsy affects you and your mood your memory is shite who knows what you are feeling confusion social isolation and fear. A super show of support is available when your family visit and the “what worked what didn’t work” will be archived with little or no attention to detail however adopting the Helen Sanderson model is very impressive I guess. I know there are some great people supporting our dudes however there are also some who are rubbish and should never be doing this work. Shame on the care agency’s and company’s for employing them. If you have a mental health problem or a learning dissability you are at the bottom of the heap in my experience. Many of the disabled community who have a physical disability have a voice and are listened to however the silent majority of learning disabled do not and have to take whatever shite is thrown their way I can fight for my daughters rights and advocate for her but what happens when I am gone? I am so sorry for your loss X.

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