Monday, 16 January 2017

Message in a bottle.

Today is apparently Blue Monday. A named coined by Dr's at Cardiff University to predict the day of the year where things are at their bleakest and most depressing.

Currently that is everyday for me. I'm sure that's true of millions of disabled people and carers at the moment.

Last year was spent fighting for Emily. If I'm honest every year has been spent fighting for Emily since she was diagnosed at 3 with autism. The sad truth is that the fight for her was much easier when she was a disabled child than when she became a disabled adult. Our empathy, funding, services and protocols surrounding vulnerable children is clear. They may be limited but they are clear.

As a society however the rules change when these vulnerable children become vulnerable adults. The spotlight shone brightly on Winterbourne View. We were told things would change for the better. I believe that the intention is there for this to be true but as we know, intention and application are two very different things.

Responsibility and an interpretation of responsibility, are two very different things as well. It doesn't matter how many people are reminded of their duty of care under the Care Act, it seems there is always a way to stipulate adherence to it, yet a departmental distance from it. 

The threat we have lived under everyday for a year now is that Emily may be admitted to an assessment and treatment unit.  This is a psychiatric hospital. I strongly believe and have had this this verified by professionals, that if Emily is placed there, she will never leave.

There is no clinical need for this to happen, but one based on a possibility that Emily's current care package may break down, due to her behaviours which challenge. I'm told that if that were to happen, there is no other provider able to pick up Emily's care.

Yesterday I learnt that the lead psychologist in Emily's care has gone on long term sick leave. This is not their fault, but the system should be robust enough to continue seamlessly for Emily. I don't have confidence that this will be the case. This person is co-ordinating everything. Problems are still ongoing but now, with no idea of who will pick this up or what will happen to all the outstanding issues, which I'm battling to resolve already, I now feel hopeless.

I'm at breaking point. The fight which consumes my days and torments my mind at night, is an ongoing one because I feel there remains a collective societal lack of knowledge and true understanding of what it means to be an adult with a learning disability. 

Emily is tearful and anxious much of the time.

I'm including a portion of an email that I've just sent to everyone working with Emily. It's a reflection of where I am and where Emily might end up through no fault of her own. I feel broken, hopeless and utterly desperate for my daughter. I don't intend to make things any worse than they are but I have no idea what else to do. If you can circulate this, if you can help or know someone to send this to then please do. 

It's my message in a bottle that I'm throwing into the sea of the internet, in the hope that we can be rescued.




I'm also trying to resolve Emily's return to Education. There is a
meeting proposed for this. However both (redacted name of Education rep) and (redacted name of Continuing Health Care rep) are
clear that funding for this is not their responsibility.

I have also been in contact with the police twice now. They can make
no guarantee that they won't arrest Emily if they are called to the
property again. They don't feel it's necessary to meet with us but do
link in with social services.

I contacted the social worker involved in Emily's care
previously during transition to the bungalow. She has told me that as
Emily is continuing health care funded, it's unlikely she will be
permitted by her managers to be involved.

I'm now at breaking point with all this.
Many of these issues are entirely avoidable.

This weekend I had looked forward to a break but after 2 very
distressed phone calls on Saturday, numerous phone calls in the week
and several visits, I didn't get that break as we had to visit Emily
on Saturday night in order to deescalate her distress..

The last time I took a break, staff phoned the police and Emily ended
up in handcuffs on her bedroom floor.

I can't overstate my fear that due to several pressures, problems and
avoidable mistakes, our beautiful girl will end up in an Assessment
and Treatment Unit.

This is contrary to best practice guidance. There is no clinical
reason for that admission. During transition it was a possibility due
to there being "no suitable accommodation"

Yet the bungalow Emily needed was there. I just had to fight for it
against all the agencies in place to support her.

I'm exhausted from the fight of 2016.

Can it really be said that everyone is working together to prevent my
having to fight Emily's admission to a Psychiatric Hospital ? Can it
be said that any of the things I'm fighting for, for Emily are my
responsibility or role.

I do all these things because I have to but I
shouldn't have to because there are many professionals involved with
Emily's care.

I know that all professionals are hard working, decent people,
managing budgets at a terrible time in the history of the NHS and
local government and are very busy.

However Emily is a valuable and vulnerable young woman, who needs to
have her voice heard and her needs met.

I therefore propose that an urgent meeting is called as soon as possible.

2 comments:

  1. Dear Message in a Bottle,
    Does Emily have a Person Centred Plan which tells all about Emily and her life from birth?
    Last year I wrote my son's and spent 2 months putting it together, using lots of photos.
    Only a parent can write a true Person Centred Plan for their child.
    Are you able to put one together, in any spare time that you might have?
    My son is 29 and lives in a bungalow but does not share with anyone because he wouldn't be able to. He has support 24/7. The carers are just for him.
    My son's PCP has sections on his Autism and his senses, his interests (though limited), his daily routines, his environment, the approaches needed, Positive Behaviour Support, Staff Training.
    Each section came out of my own head with the knowledge and understanding that I have of him and what works best for him. My son's carers contributed to the PCP.
    Positive Behaviour Support and the approaches that work best for my son most certainly do not include being handcuffed by the Police! Nor do they include being put in a Psychiatric Assessment Unit!
    Emily's home environment and lifestyle should be personalised to Emily, with the right carers around her to give her the care and support she needs to make her feel happy and less frustrated.
    Dear Message in a Bottle, I hope this helps just a little.
    Have the courage to continue with your fight.
    Best Wishes, Maureen x

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  2. Hi Nicky, I'm really sorry to hear what has happened to your daughter and how difficult this is for you just now. I'd imagine it have taken courage to write up a summary of what is going on.

    Is it a psychiatric assessment centre that your daughter may be going to ? Are there no Learning Disability assessment facilities in the NHS area ?

    There is a massive difference in the expertise between the staff and there should be a high emphasis on Occupational therapies and Speech and language along with Nursing staff who should be well trained in understanding autism specific needs.

    I wish you all the best and hope both you and your daughter can get the support that you are both needing.

    Peter.

    ReplyDelete