Wednesday, 29 June 2016

Meeting expectations

Why is it that people who have proven themselves to be untrustworthy always get really offended when you tell them that you don’t trust them?

Today we went to a five hour meeting of the principle people involved in their professional capacity, to manage Emily’s transition from residential school to a home of her own.

I called the meeting last Wednesday after it became obvious that the school staff were finding it more difficult to manage Emily’s rising anxiety, with absolutely no information with which to calm her.

Emily was told she would be leaving the school by the LD nurse who is in charge of the transition. We didn’t know he was going to tell her when he did, he made the decision, then and there and leaving date was reinforced with a countdown in sleeps.

Emily wasn’t being given any other information at the time. Just that she would be leaving the school. In the subsequent weeks care staff have been doing their very best to manage this. They’ve been asking for more information and I’ve been asking for more information but nothing final has been decided due to inter-departmental wrangling.

In lieu of any facts Emily did what any of us would do. She filled in the missing pieces for herself.

Last week I called the meeting because we needed to tell Emily more, because we needed to prepare Emily. I said we needed more LD support because at the weekend Emily would be phoning home and everyone needed a contingency plan. The advice from the LD team was still, don’t tell Emily anything.

On Saturday we got a call. Emily was very distressed but also she had vocalized the fact that this week, the week she was leaving, she would be coming home to live.

We haven’t seen Emily since the countdown began. It was deemed too risky. So added to all the fighting we’ve been missing her and she’s been missing us. I explained to her on the phone that we were resting. She was very upset but eventually, she accepted it.

On Saturday, I couldn’t bear the thought of giving her nothing once the countdown ended. Nothing except complete distrust in all of us, so I told her she could come for a tea visit. She was delighted.

The tea visit was today and it was clear that the LD team were not exactly happy but ultimately if they’d provided some kind of information, any kind of plan I would have acted accordingly. They didn’t so I had to make a decision.

I’m so so so SO sick of experts right now I can’t begin to tell you. I'm sure they're equally sick of me but on we go. We sat in the meeting with wall to wall professionals and I looked at them and wondered how any of them would deal with this situation, as a parent, if they were where we are.

Since Emily was diagnosed at 3 years old it’s been one long version of getting the diagnosis, putting her in the car and going home alone. Various psychologists, psychiatrists, paediatricians. LD Nurses, service providers, social workers, dentists and doctors have all given me their informed opinions and they have  mostly been caring and dedicated, compassionate and practical.

A few however have been sanctimonious, patronizing, over qualified, arrogant, management speaking, theory based, budget focused, career enhancing, robots.

Parent carers are their kryptonite. Because no matter how many training courses they attend or give, the fatal weakness for any superhero, is that a paper qualification doesn’t mean shit.  The shop floor is the only training that counts. The hours and hours and hours that you accrue as a care worker or a parent carer is all that matters.  For a parent carer this expertise multiplies exponentially.

Some parent carers are awful. But most in my experience and this extends to sibling carers and those caring for their parents, are wrought from love. Point me to the training course that qualifies anyone for that and I’ll accept that we are then equally capable, of deciding what’s best for my child.

Anyway the tea visit was fine. I had to relieve Emily of our landline phone which she’d decided to take with her, by pointing out that when she phones I won’t be able to talk to her if she takes it, but that aside it was just so bloody good to see her.

Emily looked at me once I stopped hugging her and said “Mummy has wet eyes” and I did. “They’re happy tears Emily” I said. And they were.

The net result of the meeting was that we have a sort of idea what’s happening next. The man from the Council had to endure Phil and my pent up frustration at the behaviour of his department for the last 3 weeks.  I walked out of the meeting 3 times and cried twice. But again it’s been a really tough time.

There were some unbelievably odd suggestions, like moving Emily to another residential placement, which given that we’ve spent 6 months focusing on single occupancy community living, made no sense at all.

It’s apparently a contingency plan. Oh ok then.

If Shropshire Council would just sign the lease on the bungalow it’s sorted, without the need for a contingency plan but apparently that’s not a possibility. He couldn’t say why but he would find out and let us know by the end of the day. He hasn’t. But I’m not surprised.

Then we moved onto the “terrible awful”. I ended up sobbing and begging again because I really can’t begin to explain what the idea of sending your child to a psychiatric hospital because “it’s not our responsibility to house Emily” does to a parent of a learning disabled child.

But Phil probably summed it up best when he said “If you try and do that to Emily, I’m phoning the police”

He’s right. To us the idea of someone doing that to our girl seems criminal. They had their court of protection meeting before we got there and apparently it’s for the deprivation of liberty that her locked front door will create. But as I said at the start and to them all in the meeting “Do you think we trust any of you anymore?”

Shropshire Council won’t sign the lease. The CCG can’t sign the lease and the care provider really shouldn’t sign the lease. I’m sure we’ll be getting a phone call in the next couple of days explaining why their solicitors feel exactly that way and so we’ll be back to square one. Every time we offer to do it no one answers us.

So trust is gone and hope is hanging by a thread and still we wait.

1 comment: