I’ve made a vow never to read another academic article about meltdowns. I guess over the past 20 years, I’ve lapped up anything I could lay my hands on, in the quest to make life during a meltdown a little bit easier for all.
On the whole, I know what triggers a meltdown for Steven. It is usually an unexpected change. Or something unexpected happening. Or something not happening that he was expecting to happen. Not being understood is also a trigger. Sometimes I hear Steven in the bath telling his support worker a comp!icated story about Suggs and his big hat. I can hear Steven descend into a meltdown, simply because the other guy doesn’t get all the references. It happens with me when I’m dog tired and can’t instantly recall the names of all the people getting off the train in Unseen Bean.
Once a meltdown is underway, it can be a very hairy experience. There is always the possibility that you may be hit. Or that something will get broken. Or that you will go violently insane with 6 hours of repetitive talking. Its the latter that does for me. In those moments, Steven can’t process what he is saying, let alone any response you might say. So, verbal communication during a meltdown is worse than pointless – it adds to and exacacerbates the meltdown. The only thing to do is silent containment – to stop Steven hurting himself or others.
Where I disagreed with the Unit is that they always maintained there was something willful about Steven’s behavior during a meltdown (although they wouldn’t actually acknowledge he had meltdowns). So subsequently, they held that all the behavior during a meltdown could be eradicated. I’m not saying this is the case for everyone but in Steven’s case its a nonsense.
When Steven comes out of a meltdown he has hardly any recall of what just happened. The most he can say is that “Steven Neary’s had his silly head on”. Trying to probe why he had his silly head on gets nowhere.
This morning it started upon awakening. My guess is that there was a change to the bath routine. One of the support workers is having housing problems and I let him stay over last night. He thought he was being helpful because he started to do the bath before the normal guy showed up. An hour later, there was water all over the bathroom floor, a bowl of breakfast fruit salad up the living room wall and the TV broken. By now, the usual Wednesday routine is in tatters and it is going to take some retrieval.
Could the meltdown have been prevented? Probably not. Could we have minimized the damage? Possibly. Steven broke the TV whilst the support worker was in the garden hanging the washing out. Unbearable though it may be, it is best not to leave Steven on his own during a meltdown – anything could happen.
So after having to support the support worker, go to Curry’s to buy a new TV and clear up the bathroom, I finally made it out the door to work at 12.30 – 6 hours after being rudely awakened. I then had to sit in a pub for an hour to do the support workers’ wages. And missed the bank, so am now four days late in paying the direct payment tax bill.
The way I see it, meltdowns are a uniquely individual experience. Each person needs to be understood and generalisations are seldom helpful. In the week that Swansea council are planning to send Claire Dyer to Brighton because of her meltdown behavior, I suggest we get off the idea that the person is case study who can be ” righted” and think more about the support the person and their family need to live with this inevitability of the autistic condition.
Feeling a bit wobbly at the moment. We had a serious storm early this morning. I was upstairs on the computer – Steven was downstairs watching the 2000 Christmas edition of Top of the Pops. Suddenly a massive bolt of lightning hit the house and all the power went off. It was eerily quiet. After about 15 minutes I’d sorted the fuse box out but it looks like the storm has killed our router. At the same time, I noticed water coming through my bedroom ceiling and down the wall. A couple of cracks started to appear in the wall.
That set off three hours of totally pointless phone calls. Is everything sub, sub, sub,sub contracted out these days? There is such a maze of outsourcing I find it impossible to work out who is responsible. Talk Talk clearly have done some serious outsourcing to goodness knows where. I couldn’t understand a word the woman was saying to me in the 70 minute conversation but upshot was all her troubleshooting led to nothing and I need an engineer – the earliest he can come is Saturday. Exactly the same with the Housing Association. Tenancy manager? Property management team? Contracted roofer? Who knows? Their best advice until they can sort who is responsible is to keep Steven away from the plugs. Cheers. I’ve come away for my fortnightly respite night with no idea if I’ll have a ceiling when I get home.
But every cloudburst has a silver lining and I have to say that the start of the #LBBill Facebook group has been just awesome. I’ve never known a group have such a diverse membership, so in just two days the whole collective ethos of the Bill is being played out in the group. So far we’ve had people with learning disabilities join, lots of interested family members, carers, legal people, journalists, media, activists, providers, advocacy groups, housing folk. They’re all pitching up. And its jolly hard work keeping up with all the ideas that are coming forward. All the engagement, humanity, and common sense of the #justiceforlb campaign is continuing in people’s determination to see the Bill happen.
And today of all days, it couldn’t be more telling. Some of you may be familiar with the case of Claire Dyer, who since September has been under section in a hospital in Wales. Despite being under section, she is allowed home most days, with hardly any of the behaviors that the hospital are using to support their plan to move Claire away. Today, Claire and her family were told the devastating news that she is being moved, on Wednesday, to a medium secure unit in Brighton. For assessment. 100s of miles from her home. No best interests assessment. No plan for what the treatment will be and how long the assessment will last. Another autistic person wrenched from everything she knows and helps her feel safe.
Whilst Claire packs her suitcase, the Bubb group had their 2nd meeting this morning. Also hot of the press is the news that the Winterbourne JIP is no more, replaced by the Transforming Care Winterbourne Assurance Group. More transformation. Never have I felt less reassured by an assurance group. And Southern Health NHS Trust continue to make the Ryan’s family hell with their total contempt for all notions of human decency.
Boy oh boy, do we need this Bill tomorrow.
Recognizing the pain one is in is a very delicate business. Pain is obviously full to the brim with dreadful emotions that are so hard to contain. But I feel that it is never a good idea to set oneself up in a hierarchy of pain. The temptation is always to put oneself at the top of the pain chart (because life feels so bloody painful) and see any other in pain as less than one’s pain.
Last week I got a cab and the driver was one of Steven’s old drivers. This is how the conversation went as I did up my seatbelt….
“I heard your wife had been very ill?”
“Well, she died actually”.
“My wife nearly died 2 months ago”.
For the rest of the journey, I listened to the story of how his wife nearly died. I found myself switching off. But I didn’t want to say anything. It would have sounded like I was trying to trump him by talking about my wife who actually died.
At work, I often fall back on that therapy cliche of the drama triangle – the victim, the rescuer and the persecutor. Someone, who has set up camp in the victim position will see everyone in their life as a rescuer or a persecutor. And it takes my breath away how quickly the victim will shift the other position to suit their victim stance. A good friend will suddenly be seen as the villain. It happens in the work. If I try and get the person to reflect that they may be causing the problem in their relationships by entrenching themselves in the victim space, I am suddenly seen as the persecutor. Recently, someone was furious with me when I took a week off after my wife died. For them, their victim space is built on the belief of ” nobody is ever more ill than me”. So when someone they know falls ill, or dies, it triggers fury. That’s the other thing about the drama triangle – the person who has made their home in the victim space will fight tooth and nail not to have anyone else move in there.
Whenever I write about my battles in the social care world, I am always mindful not to present myself as the victim. I find it a real turn off, quite frankly, and would hate others to see me that way.
Sadly, I do encounter the victim dance quite often amongst carers. I understand why – it can be a shit life in the social care world where unspeakable things happen to us and the people we love. But it drives me bonkers when I see people using their pain as a trump card or a way of scoring points. Or worse, when someone uses the fragility of their pain to make another person feel bad or guilty. This isn’t the way to go about things.
I believe we are on the edge of a real breakthrough for the learning disabled and their families. The #justiceforlb campaign has brought about a connectedness and energy that I’ve never experienced before. But to experience that energy, one has to move out of the victim space. To stay in that space, the energy will be seen as threatening. It is incredulous to me that someone would chose to embed as a victim but they do and this is just a big a threat to change as the Bubbs of this world.
Is it too much to hope that we all try and occupy a similar space, rid of the competitiveness of pain? I think its worth a try.
So. A week on from the news breaking that NHS England have given the WV gig to Sir Stephen Bubb, where are we?
Probably two steps further back than we were a week ago. In the past week most of the members of the Bubb & Squeak breakfast club have issued statements that they will be putting the views, needs etc etc of learning disabled people and their families at the heart of the planning. This is an immediate red flag for me – people who put disabled people & their carers at the heart of things don’t announce it. They just do it. They do ridiculously old fashioned things like ask questions, listen, understand. (I bet the “modern way” crowd are pissing themselves laughing over that idea). As time passes, it feels like everything about the WV review is shamefully empty and self serving.
On Monday the Bubb group are meeting up again. No details on what is happening. Another brekkie? Paint balling? Who knows. For me, this group is now so tainted, it can only do more harm than good. To be so out of sync with the people you’ve been appointed to serve goes beyond offensive.
In the meantime, NHS England issued another statement today, with a promise of a new announcement next month about a new action plan for dealing with the ATU issue. This is probably Bubb’s The Plan. The words carry an air that things are whizzing along. The reality has a more snail like quality to it.
The #justiceforlb group campaign was about all the things the Bubbfest is not. Profound engagement. Blistering creativity. Passion. A heart. Ears. Drive. Brains. Stoicism. Incredible humour. All the attributes needed for fantastic change.
I get livid when I see something posted about Bubb, the charities, NHS England and all those vacuous words. But it doesn’t last long because I know that the #justiceforlb energy is too strong to allow the Bubbs to steer the ship.
No more statements please like “we need to work out how best to engage with people and their families”. Stop it. Its bollocks. There is no intent behind that statement.
You might start though with the thought that perhaps it would work better with a power shift – we know what we want – if we think you’ve got anything to offer, we’ll engage with you.
Having been snared in the social care world for years, I thought I knew about the crap of endless form filling. But in the last seven weeks I’ve encountered a new level – the form filling associated with death. Ironically, Julie loved a form and would have been in her element now. For me, “chore” doesn’t even come close.
I’ve gained a new status. Every form wants to know your status and the correct box for me now is “widower”. I don’t think I’ve had an image of a widower before so this status feels a bit unreal. I get a vague idea that perhaps I should buy more cardigans. Perhaps I should get an allotment. I don’t know how to be a widower.
I guess widowers are allowed to feel sudden waves of deep sadness. On Wednesday I found myself standing inside our family home waiting whilst the estate agent took photos. The house was completely empty. Except for the ghosts. In every room. In every scuff mark. In every scrap of blue TAC.
My niece, who has done most of the clearing, finds one last thing left behind in the loft. I see it and choke down a big sob. It is Julie’s French vocabulary book. We were in the same a level French class in 1975 – 1977. The book, probably written in the 1940s was (is) a delight. I used to drive Mr Hart, our French teacher insane, because there were some phrases in that book that I found so wonderful, I’d weave them into every essay.
So, I stand in our empty living room and thumb through to the gardening chapter. And of course, it is still there.
” That bed of dahlias was an orgy of colour last week”.
I love the “last week” bit.
I put the book in the recycling bag and left the house for the last time.
If anyone had any doubt, this week has shown that the #justiceforlb campaign has an awful lot of welly. Bubbgate kicked off on Monday with the excruciating post from Sir Stephen Bubb about his breakfast meeting with the top bods from several major charity players and how the group, fully replenished, had come up with The Plan. Moreover, The Plan had been presented to Simon Stevens who had accepted The Plan. The post was a bit detail lite about The Plan. But heigh ho, off to work they go.
On Tuesday, a rather remarkable thing happened. Four people, quite independently wrote blogs, challenging the Bubb breakfast club. We must have all pressed “post” at the same time. Soon after, more pieces started to arrive, all despairing that another think tank had pitched up with so little regard for the people they are meant to be serving. Community Care published an article, capturing people’s disgust.
It was back foot time. Sir Bubb updated his blog where The Plan started to evaporate like a post breakfast burp. NHS England issued an embarrassing statement, basically distancing themselves from Sir Bubb’s announcements. Mencap and United Response, two of the breakfast diners, issued rather wet statements, along the lines that they felt they had no choice but to tuck in, as Bubb’s group is the only dish on the menu.
Its been a week of Bubb hell and squeak from the key charities.
Are they right? Is there only one option open for them to engage with?
Last week, I made a suggestion in the “Home Rights” post. Steve Broach summed up what I was trying to say perfectly. What is needed is a statutory presumption that a person lives in their own home. It flips the current way of doing things on its head. With legislation to support the person, any State office wishing to remove someone from their home and move them to an assessment and treatment unit would need court approval to do so. The State would have to demonstrate that it is in the person’s best interests to be at the ATU. It would be like the deprivation of liberty safeguards in reverse. The State would have to reveal why they’d be unwilling to fund a care package for the person to remain in their home. And they would have to be transparent and explicit about what assessment and treatment would be taking place and how that would improve the person’s life. The onus shifts to the State to make its case. I reckon that would stop a huge amount of people being taken from their homes and held in ATUs.
What about the 3000+ people already trapped in ATUs? How do we get them out? In a way, we would just have to apply the same legislation that I’ve mentioned above – a statutory presumption that someone lives in their own home. These people were living somewhere, pre ATU, so perhaps the starting point is for the State to demonstrate why they can’t go back there. If that really isn’t an option, then the State has to show why it won’t fund a home package for the person elsewhere. And all this would come under court scrutiny.
Of course, all this means a real commitment to support in the home but this is where really good person centered planning, positive behavior support and personalization step up to the plate. These iniatives that have been frustratingly patchy get a chance to come into their own. They provide the foundation stones of making this legislation work.
There we go then. My response to United Response is that there are other options. Options that are definitely doable with some love, belief and balls.
And not a sodding croissant in sight.
Yesterday, I was enjoying a fantastic respite night out at one of the Heathrow hotels. It’s months since I had a respite night away and the swim, spa and nice bar was most welcome.
However, some random Twitter viewing mid evening left me a nasty dose of indigestion. Have a read of this blog post from Sir Stephen Bubb – http://bloggerbubb.blogspot.co.uk/2014/07/the-winterbourne-view-concordat-and.html
Confused? Me too. NHS England boss “Simon Stevens was clear that only the third sector could deliver the promise and he wanted me to look at a plan for “co-commissioning” between the NHS and my members”. What is not clear at all to me is where all this fits into the Winterbourne View Joint Improvement Programme. Bill Mumford, the chair of the JIP resigned last week. Is the JIP dead?
It would seem not. A reliable source messaged me to say that the plan entrusted to Sir Bubb is only a small cog of the overall improvement programme. Not that you’d know it from Sir Stephen’s blog. Just count the number of “I” statements. And he’s already convened a power breakfast to get things going. It may be ego talking but from the blog, it reads like the whole plan was drawn up over a hearty breakfast. These diners must wear capes and their underpants over their trousers.
Incidentally, food seems to be where it’s at for Sir Stephen. Here is a section from his Wikipedia profile: “Stephen Bubb came under scrutiny in August 2013 after it was reported that his 60th birthday bash in the House of Commons had been partly financed by his own charity, ACEVO. Despite the charity paying him a salary in excess of £100, 000, he still felt it was fine for the charity to cover some of the costs and stated “seemed just right to celebrate my 60th with a tea party in the House of Lords on Monday!”
Leaving the breakfast table and the tea parties aside though, the blog reveals an attitude that makes me sweat and sigh for the outcome of the review. The narrative is so self promotional that it is hard to see where the people that the review is meant to be helping, the 3000+ people trapped in institutions, register on the importance scale. They hardly get a look in on the blog. There doesn’t seem to be much of a drive to hear their voice. Or the voices of their families.
I also find it disheartening that this group is just a small cog in a much larger wheel. How many small cogs are there? How do they all fit into the larger wheel? Ironically it sounds like the very people tasked with sorting out one of the big social care scandals have set up a machine that is remarkably similar to the one they are meant to be investigating and changing. Most people who need to use the social care systems will have stories of the bloated hierarchies and systems they have to wade through like marshland to get a care assessment completed and a care package put in place. The layers of systems are so dense, it becomes impossible to see the big wheel of social care. As one of my clients puts it: “You use up so much energy and time focusing on the slightly out of place ornament on the mantelpiece whilst a tornado approaches your house from the outside”.
So. Lots of talking. Lots of self congratulatory statements. Lots of new systems set up. Possibly, more necessary cogs will be identified and set up. More long review documents will be published and may get a five minute slot on Radio 4. ACEVO will feel really chuffed with themselves. And……
I’d just like to ask the latest members of the latest cog, that next time they are tucking into blueberry muffins, cured ham and a selection of regional sausages, that they remember that there are still over 3000 learning disabled in institutions many miles from their homes. And that, despite all the cogs, there are still more people moving into these hellholes than are moving out.
Alka Seltzer anyone?