ACCUSED: Autism. The Art Exhibition about PDA

 

After a while of not posting, not being greatly social media sociable, i have decided to update on why and what’s been going down. I have had a temporary break from dealing with the NHS complaint and have been working on my art. This is good and bad. Having a break from the complaint doesn’t mean it has gone away or been at the back of my mind. Far from it. Not working on it has caused me more stress and made me have less focus on the things i need to do. I am constantly thinking about the way in which the complaint has been handled and what an abomination the whole situation was and is, and i NEED to fight them still. No matter how lacking in motivation i become, i still think about the things i should be doing. Trawling through all of the NHS and Social Services lies and defamation is traumatic, it is emotionally hard work and i would rather not be doing it. However, i cannot let them free of the burden they caused my family and will persist. Even if it is at the expense of my own health and wellbeing. They already did enough to scupper that anyway, so what’s a little more of a battering?

So in my break from the complaint, i have placed my energy on a project not too far removed from it and it is my art exhibition. The exhibition is about Autism Awareness, but not as you know it. It is a PDA awareness project, and a parental blame project. It is a tangible backlash and two fingers up at the NHS and the way in which they dismissed the very symptoms of PDA and blamed us parents for the issues. This is the reason for AWARENESS and it doesn’t stop at just reading a bit about PDA, it is about respecting parents enough to realise they are genuine and aware people themselves.

bl-accusedThe work is based on the ‘Invisible’ symptoms of PDA. It also highlights direct quotes lifted from the notes and information i have from the NHS…that in itself makes a hugely interesting read.

There it is.

ACCUSED: Autism
by Bernadette Louise

The exhibition is funded. It has backing from Arts Council England and Worcestershire County Council. And it is taking place within the very geographic region that harmed us, Redditch and Bromsgrove. The Artrix Arts Centre in February 2017. It isn’t that long away, and i am finally getting to grips with the content, but i have a lot to do and a lot to organise. I also have to be a parent and a partner, so the NHS idiots can wait a little while longer while i attempt to carry on with my life.

If anyone would like to contribute to a piece of work, i am running a public facing engagement project and would love to include your experiences too. Please do contact me if you would like to know more about that or any part of the work.

Photo by Mac James 2016.

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Dear Victoria Derbyshire Autism, PDA, NHS

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Dear Victoria Derbyshire

I wrote to you on 15th June 2016 hoping that you would be able to share my story on your programme. Things with the NHS and their malpractice have continued to worsen since i wrote to you, and the behaviours NEED exposing. Even with an expert diagnosis of Autism for my son, we are still suffering at the hands of the mis-management of our PALS complaint and finding ever concerning emails shared through my access to personal data request.

I today received an email that is horrifying to read, especially in light as being innocent of their initial accusations of Fabrication & Induced illness. as a family we have been heartbroken, by allegations and intrusions, we have been defamed in utterly unacceptable ways. We need to take action, yet having previously spoken with a solicitor, we have no way of moving forward. He stated that although it appears that the NHS and local authorities have acted wrongly, suing for defamation is a “rich man’s game” and one that we will essentially wasting our time. I am beyond frustrated and upset as they need to be held accountable. As with an new email that has come to light today we have no confidence in the NHS moving forward. I am beside myself with anger and grief and need someone to help get justice. We have suffered harassment at the hands of ‘keeping an eye on this family’, yet we have ABSOLUTELY DONE NOTHING TO WARRANT THIS…. i have attached an email for you to see, which contains information that SHOULD NOT HAVE BEEN SHARED outside the confines of the Child Protection Meeting (CPC) and also, it as lies within it which i have audio recordings to prove. I have also sent you a link to my online blog that i tried to keep for my own venting and it is very personal, but anonymous. I am aware that i come across as NOT very media friendly due to my hot-headed language, however, it i can be very articulate and the blog really is only for release. It has details on there of emails from NHS staff members, letter to MP.

Originally i omitted staff names, but i have today contacted my local newspaper and they advised me that it is ok to share names with the print evidence and if there is any defamation, the staff must be given a chance to respond. I have informed the NHS that the Media are aware of this case, and that the local paper ARE picking it up, but with the in-depth and complex nature of the harm the NHS has caused us, they are choosing which angle to pursue.

I hope that this helps you find reason to look in to my situation, as this is happening across the country to parents of autistic children particularly PDA.

Please could someone contact me to discuss further. I am in desperate need to share this and gain support to fight this injustice.
Please.

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Letter to our MP re NHS & Children Services #ASD #PDA

 

 

I’m publishing a Blog Safe version of a letter I wrote to our local MP following the Child Protection order placed on my Children.

I feel that even though this is a brief encounter with the reality of what we as a family have gone through in recent months, it perfectly summarises the injustice of this case, the way the local authorities are in cahoots and the blatant nepotism that occurs within small-town Local Authority/NHS teams and the ‘Higher Powers’ they believe they hold.

 

 

I love this opening statement by Lydia Lunch in her autobiographical book ‘Paradoxia’

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But, in this instance, I feel I still need to protect my beautiful little family from more shit.

Not sure how this is going to work…I’m taking out names and replacing them with professional titles. I am definitely not doing this to protect the people who caused us harm. I will be getting to them in due course, don’t worry. Where I talk of the children, I will talk of The Boy and Toddle (bearing in mind this whole thing only came about because of the lack of diagnosis for the Boy and Toddle is only affected by the ridiculous accusations of is parents being accused on FII, so in turn is clearly afflicted too.)

I will however state to print that the teams I am referring to are:
Redditch and Bromsgrove Child Development Team
Worcestershire County Council Children’s Services
Redditch Early Help Hub

Our MP has been really helpful, and I met with her about this issue. She didn’t rush me, she let me take as long as i needed and she listened to what I said. Regardless of the Political Party, and how some of their decisions impact on our lives personally, I actually like her quite a lot. She did contact the services on my behalf adding weight to my complaint, but having had a very lame reply from Children’s Services, and still being stuck on Child Protection after a postponed Conference Review, I need to chase this up.

Letter Begins:

Dear Our Local MP

I have asked to meet with you regarding a Section 47 Child Protection Order that my children have been placed on. This is due to the so-called “significant emotional harm” that I have been inflicting on them. They have claimed that I am guilty of Fabrication and Induction of Illness (previously referred to Munchausen’s by Proxy). This has devastated me and my partner and the allegations are far from true. I am sure this is an obvious thing to say but the very fact is that we have proof to disprove this NHS/Social Services allegation and it is being disregarded by Social Services Manager without thorough investigation.

Firstly, the referral to Social Services was made by an Occupational Therapist we had been in contact with regarding my son’s behavioural and sensory difficulties. The Child Development Team claimed that The Boy was a normal 3 year old boy and they were not seeing the difficulties described at home. The strategy meeting held by Social Services was only attended by NHS ‘professionals’ and Early help hub representative who we had never met and no one who was able to defend our corner in our absence. They were all singing from the same hymn sheet as they all work in the same team, none of whom are experts in ASD/PDA. The team had previously decided that:

Quote CDT Meeting 4/11/15 – All

“ All agree that The Boy does not meet the criteria for Autistic Spectrum Disorder including PDA (Pathological Demand Avoidance). Presentation: Significant anxiety issues. No developmental difficulties. Mild expressive language delay and delay in attention skills.” 

There are many issues with this and i have placed a complaint against the NHS staff involved with PALS, as they have clearly highlighted the areas of difficulty that The Boy presents, but have not attributed them to the very condition that we felt prevalent. Autism Spectrum Disorder/Pathological Demand Avoidance. There are many instances that the ‘professionals’ have misplaced the blame for The Boy’s difficulties and we have had to defend our parenting and motives. I have evidence that the NHS have been seeing the difficulties and the symptoms they described themselves are perfectly befitting of an ASD/PDA diagnosis. But PDA variant is rarely diagnosed and less prominent than both Aspergers, and what is now called ‘Classic Autism’. The team work to a fixed criteria and have aligned The Boy’s difficulties with parenting and particularly my own mental health condition.

The final NHS ‘diagnosis’ of The Boy not meeting the criteria should in fact be discredited as i understand it it is not NICE Compliant as there was no present Consultant for The Boy and no Psychologist present at the the CDT meeting where the decision was made.

I have also since found out that in the NICE guidelines, it is the duty of the NHS professionals to feed this ‘diagnosis/or lack of’ in person to the family. Instead, the meeting went ahead, with an Early Help Worker present, who then was the person, who whilst i was arguing our case on the phone with her, was insisting that The Boy DOES NOT have anything wrong with him. That is what and how i was told, and a good few weeks later did we get the minutes in the post from the CDT meeting telling me the NHS position on diagnosis.

Secondly, the Social Services accepted a referral, not investigating that the person who is responsible for deciding a case of Fabrication/infliction (FII), the Paediatric Consultant, was in fact Dr H.A, the only Consultant in Redditch & Bromsgrove, someone who i have previously made a personal and professional complaint about. Who we now know is also the Safeguarding Manager. I would have thought that this Consultant could not have been able to make an informed and impartial decision about whether or not to make a complaint to Social Services and should have referred to an equally senior manager?

Thirdly, and most importantly, The Social Services are now trying to discredit Private Assessments and subsequent diagnosis that The Boy does in fact have High Functioning Autism, PDA variant that were made by two highly respected experts in the field of ASD/PDA. Social Services are accepting NHS opinion over Private simply because it contradicts their initial accusations.

I have shared the very thorough reports with Social Services and they are trying to say they hold little/or no weight as they, in their words “have two conflicting medical opinions”. My argument is that they don’t. The NHS opinion is not Expert, and it is not (as far as i can tell) NICE compliant. They have ignored the root cause of The Boy’s anxiety without expertly investigating PDA symptoms and totally forgotten about the sensory, speech & social delay issues they themselves highlighted.

The Social Services report for the first Conference on 17th December, is a disgusting, discriminating accusation of FII. They have torn apart every facet of my personality to try and make it fit an FII case. The report focuses on Fabrication, and the “gain” i get from this, but the Conference focussed on the anxiety of The Boy, and that it was Inflicted on him. I am yet to see which is the most prominent issue they are following as i do not believe both can co-exist. If i were fabricating it, there is no evidence that i am “gaining” anything from this. And it is not possible to “induce/inflict” ASD on anyone. They have included my One Year old son in this who they have never encountered, and who has no difficulties. The Social Services are not medical and they are relying on the NHS opinion and taking their word. And why? We have disproved the allegation of Fabrication. But the social services are unwilling to accept this, making our next conference on 17th March, essentially the same meeting as before, the NHS will all have their vote when none have been involved for months and we’ll still be accused of FII.

The Social Services have been lacking in communication with us, they have not done what they said they would, they have misinterpreted things we have audio recordings of, it goes on.

Questions to you:

  1. Your opinion on Private Assessments and Diagnosis? is it worth less than NHS? When the Government are trying to push for privatisation of services, why, when we do go Private and call in very expert opinions, does it hold less weight with a Local Government Team such as Social Services?
  2. At a Child Protection Conference why does every individual involved in the CDT get a single vote and not a Team vote? e.g. if 2 staff from The Boy’s nursery attend the CP Conference they get only one vote, likewise if two Homestart staff attend, they would only get one vote. So why  is it acceptable that the NHS get several votes when they work together on the same diagnosis?
  3. A CP Conference Chair that is supposed to be impartial but is actually an ex-social worker working for the very same county council that are taking section 47 action against us?
  4. The assumption of guilt within the first Report, Conference and following Child Protection Plan. The recommendations were put in place to actually prohibit us from clearing our name and getting the correct diagnosis in order to help The Boy’s wellbeing.

Letter Ends.

So, i don’t know why i need to post this, i just feel that if i start posting all the correspondence that relate to this insane case, maybe i’ll feel that i have some online account rather than just my massive and ever expanding folders and living inside my own head with the burden of the injustice.

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CAMHS – WHAT? Discrimination against parents?

CAHMS Discrimination

Now change the words “High levels of anxiety” for ‘Cerebral Palsy’
CAMHS – Case now closed. Report letter written and seen by parents. Cerebral Palsy. Recommendation made that parents seek support for their cerebral palsy. The Boy senses their cerebral palsy and so gets cerebral palsy too.

Now change the words “High levels of anxiety” for ‘Cancer’
CAMHS – Case now closed. Report letter written and seen by parents. Cancer. Recommendation made that parents seek support for their cancer. The Boy senses their cancer and so gets cancer too.

Right….read all that? Too much? I usually am. But i am totally screwing at the actual blind-sightedness of these people. I cannot understand for one second why they would struggle to take on board my partners very own difficulties as potential GREEN LIGHT for what is going on with our son. Yeah, genetics. It’s a no brainer. PDA.

My own anxiety has been compounded beyond belief in recent dealings with this kind of ignorance and essentially disability discrimination. I have a diagnosed mental health condition brought on largely in my adolescence, it has come to the forefront of late due to the stresses we live under. Is this truly something that CAMHS would like to take me on about? To suggest that it is our doing that our own disabilities are causing the situation / causing our son harm? To suggest for a moment that i have passed on my mental health disorder to my son, WHAT THE EFF?

Our personal anxieties are born out of perfectly reasonable-reason, much of which can be attributed to our environment and upbringing, however, my partner has a neurodevelopment disorder fuelled by anxiety and that can not be dismissed here as, us, simply needing to deal with our own shit first. HA! What the flying effing gitswine?!

….Oh and yeah, we have to two children. The second one is a different kind of a child. So clearly, we have broken The Boy but the Toddler Tank got away scot free. How cruel and insensitive of our disabilities to cause so much crap for one child to damage him for good, and yet the other gets off pretty lightly. Except for the fact that he doesn’t…he is assaulted every.single.day. by The Boy’s ‘anxieties’. But no, it’s pure aggression and lack of interpersonal skills and empathy that are causing the second boy Toddle to be knocked from pillar to post, so, that’s our fault too..

NATURE. NATURE.

NOT nurture.

So there.

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