NHS - Failing children with Autism?

Recently I have read an interesting report detailing that, The NHS is 'failing children with Autism.'

It is believed that children with Autism are having unconnected mental health issues misdiagnosed as 'unfortunate or unavoidable side-effects of autism.'

Even when issues have been correctly identified often the help is unavailable or in some shocking cases so inappropriate that they in fact make the child's mental health worse.

What makes this all the more frustrating is that the large majority of these mental health issues are easily treatable with the correct understanding, something that seems surprisingly lacking in the NHS.

I have mixed feelings on this. As we all know the NHS is a largely underfunded and overstretched service which has the patients best interests mostly at it's heart but has it's hands tied with red tape and over worked staff forced to spread themselves too thinly.

I fought hard against the NHS for seven long years before someone would listen to my concerns about my daughter and I was no longer labelled an 'attention seeker' but once we got that diagnosis so much more help opened up for us. Without it Ana wouldn't be able to enjoy respite care once a fortnight, where she gets to mix with other children and be herself without the constraints of what society expects. For that we are very very grateful.

When the NHS get it right they do the most wonderful even miraculous job. But sadly when they get it wrong or fail to listen the effects reach far and deep into the lives of those that need their help and understanding the most.

What are your thoughts and what experiences have you had with the NHS and Autism?

Wordless Wednesday - Sisters

So Tired Of Fighting

For once in my child's life I would love for her to get the help she is entitled to without having to fight tooth and nail for it. It that too much to ask?

Evidently it is.

Back in September 2009 after a very long referral process we finally got a visit from an Occupational Therapist to help us with some minor Aids and Adaptations we needed to our home that would not change Ana's life dramatically, but make it that little bit easier.

Our main requests where for, a substantial lockable door for the open side passageway to our home, to reduce the chance of Ana wondering off or leaving the house without my knowledge and an over the bath shower for help with personal hygiene.

Credit where it is due, the side door work as been completed and I really couldn't be happier with the end result. It is just a shame that it took over two years of constant badgering before the Housing Association would admit that a bodged shed door was hardly what the brief had asked for.

It was hoped that the shower would have been installed before Ana started her periods, unfortunately that milestone as come and gone. Ana coped amazingly well, but the use of a shower would have made things easier and helped Ana feel cleaner (she disliked the thought of sitting in the bath during her cycle).

The last time I heard from the Housing Association on the state of play was back in the beginning January when the man in charge of the adaptation works stood in my living room and promised me in person that the works would take place in the next 7-10 days. Clearly they operate in a different time zone then the rest of us. Repeated attempts to contact him remain fruitless

The last time I heard from the Occupational Therapist's office was back in March when after several attempts to contact her I was told that she was no longer dealing with our case as she had since moved onto Adult Occupational Therapy. Not to worry though, as our new OT would contact us soon to introduce herself.

This has all become extremely frustrating, especially when the Housing Association's website and other associated documentation clearly states.

"Minor aids and adaptations

• We will complete minor aids and adaptations within 31 calendar days of receiving a brief"

I have finally had enough of fighting and have given both the Housing Association and the Occupational Therapist one last chance to contact be by the end of the week before I pass my frustrations onto my MP.

Watch this space.

Autism Awareness Month

Today is the start of Autism Awareness Month and we will all be wearing something blue to show our support.

More people need to be made aware of autism, it's signs and the difficulties it poses both to sufferers and their careers.

It Looks Like Things Are Starting To Move!

Yesterday someone from out Housing Association came our to measure up all our external doors in preparation for changing them for the Aids and Adaptions needed to our home.

I was extremely impressed with the choice of door made available to us, we could choose the colour, window type, if I wished them to open outward or inwards and even if we would like a cat flap installed! It was like being in door choice heaven, well not really, but you get the general idea.

The workman wrote down everything I asked for and even added some notes to the job sheet when I asked for spacific things, like for the work to take place while Ana is at school.

So hopefully this is a sign that the much needed work on our home is about to start taking place. I hope the long wait has been worth it.

Wordless Wednesday - Titanic

Ana has got payback!

What an odd use of the phrase.

Ana has just returned from school and written in her home diary for lunch time is 'Ana has got payback for bullying another child and being rude to a member of staff.'

I do hope that mean that she was appropriately dealt with and they just didn't let the child or member of staff kick her in the shins

I can't get much out of Ana other then the fact she didn't do it. You'd be surprised at the amount of stuff that people didn't see Ana do. Anyway further questioning will result in a class 1 meltdown, so I have told her bullying and being rude is wrong and banned computer time for a week.

I have also told her I will speak to her teacher when I am at school tomorrow.

Ever want to hide and just come out when the kids have left home?