Friday, 8 July 2016

A little bit of hope






Last night at 10.30pm after another day of no news from the Council or the CCG but with lots of help and support from everyone online, I got the following email from the CCG. The tone reflects what I perceive to be the joint authorities irritation with our persistence. I reproduce it here in it's entirety having removed the address. 


Nicky

An update on XXXX XXXX.

Shropshire Council and the Clinical Commissioning Group have reached an agreement in principle regarding XXXX XXXX.  In order for this to be implemented, legalities need to be confirmed by both parties, along with the landlord, Severnside Housing.  Shropshire Council and the Clinical Commissioning Group will determine a timeline of actions required, and will update you tomorrow regarding this.  As soon as all legalities have been confirmed, and all necessary work completed to ensure the property is safe and suitable for Emily’s habitation, keys will be provided to the CCG for distribution.

I'm interested in the timeline they speak of. I hope it will be one which doesn't delay any further and can be implemented immediately. Yesterday I emailed both authorities, pointing out a best interests meeting could remove any more blocks to Emily's care pathway.

In the absence of any information but aware of the leaving day having been passed, Emily has naturally decided she's coming home. 

This can't happen. Emily is being told this today and it's too dangerous for me to be there when they tell her this. It's too dangerous because Emily's anxieties are so high now that she is displaying behaviours that challenge again. I want to be there I want to make sure that this is explained to Emily in a way that assures her that something which she can't help, is not her fault. No one of this is her fault. But she'll pay the price of it everyday of her life.

When Emily moves she'll have a care package of 3-1. This is a 24 hr care package. I was that care package for 15 years. It's not that we won't let Emily come home, it's that Emily can't come home because she needs much more than any one one person can give.

I've been told online several times that I'm a bad mother. That I abandoned my child and that I'm abandoning her again now.

That's ok, people will comment and make judgements and assumptions based on things they can never understand. That's human nature.

There is nothing that anyone can ever say to me about Emily leaving, that is ever as bad as what I think about that. Judgemental people should rest assured that I have a troll permanently embedded in my brain, reminding me.

I know that i never wanted to be the 80 year old mother of a 50 year old learning disabled child who then loses everything when their parent dies. Who has been "kept safe" but then has to adjust to independent living when everything they have ever known collapses around them.

I made that determination when Emily was diagnosed at 3 years old. I knew her life would never be easy. I knew the world mocks and laughs and latterly has become hateful towards people like Emily.

I learnt that everything the rest of us take for granted would not be granted to Emily without a fight. Education, accommodation, health care, justice and freedoms are not routinely positively experienced by learning disabled people. 

Until the system extends more than a grudging hand of assistance, the experience of Learning Disabled people and those of us who love them, far more than can ever be expressed in words, will remain the same.

The easiest part of this transition should have been finding the house. It will be the second most traumatic move of Emily's life.

I'll leave it to the words of one of the finest people I know. Mark Neary. His blog is a masterclass in articulate determination but it was a tweet to me yesterday which sums it up best

 " So offensive that an LD person's life has to be remoulded to fit bureaucratic shite."



2 comments:

  1. I cannot begin to tell you how disgusted I am to read of all the troubles you have been having to get Emily a safe place of her own in which to live. Having read the above I also cannot say how angry it makes me that people will criticise you for doing the absolute best by your child. I am hoping every day that this sorry saga will be over and the keys will be in your hand and that Emily will adjust to her new living arrangements very soon and with as little difficulty as is possible. My thoughts are with you all.

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  2. No one has any idea what another person is going through until they have experienced it themselves, walk a mile in my shoes is a very meaningful expression, and until they have done it they should shut up.

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