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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.
The 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.
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.
Please follow the link and sign my petition for ASD/PDA recognition by the Local Authorities and NHS Teams we deal with daily as parents. I am petitioning against the Parent-Blaming culture that is rampant amongst ‘Professionals’ and want to draw more attention to the actual impact their actions have on families
Right, i do not know where to start with this update. The children came off Child Protection yesterday, at the first review!… It’s basically unheard of. Some absolutely disgusting allegations of FII (Fabricating and Inflicting Illness) were proved to be incorrect. We have a Diagnosis by two very well established Professional Experts in ASD/PDA (Autism Spectrum Disorder/Pathological Demand Avoidance). And we had one totally corrupt and non NICE compliant NHS diagnosis of ‘nothing wrong – blame parents’ that made the referal (they are fools! Influential fools though). So we very rapidly, but with a lot of my research and fighting came off Child Protection. Some might think this is a big deal, off CP, great. I wish it were that simple. The main thing here is the boys are fine, we as family are no longer threatened and we won, right? Yes. The feckers were wrong. But No, it’s a Small victory in light of everything that came before and has since followed. Literally the morning after the Child Protection Review where a unanimous vote took the kids off the CP plan, I recieved emails from the NHS Information Governance team that i’d been trying to get for a long while. The emails i requested under the access to personal data act and i finally got them.
Holy freaking sheeeeet.
Yesterday was a victory yes, but the way in which the Social Work Manager tried desperately to cover her arse by telling out-and-out lies was far from pleasent for us as a couple, and the lack of professionalism by the Chair and Social Worker surprised most of us. Anyway, the boys, they are great, safe, gone and going no where, and thank frig that’s all finished. Social Services messed up. Big time. It’s my job now to evidence all their errors and take them to court for various legal breaches. Of course, I’ll do that, it’s a bitch and it won’t be an easy task. However, although knowing it is pretty complex, i know it’s cut and dry from my perspective once i finally gain the strength to go through the reports with a fine tooth comb. Bang to rights.
Anyway…there is an in depth complaint in with PALS (Patient Liaison Team at the NHS) and it has been in progress for some time…it is this complaint that i feel gave weight and reality to my concerns with the initial referal from the NHS Child Development Team to Children Services.
As usual i have had do to all of the ground work, and working hard to get to the bottom of the injustice. I worked my way through reports, minutes, regulations, laws, all to get to the point i knew injustice had occured. So with our victory yesterday i should feel good. But nah..I knew the main task had just begun, the work has just started to see the NHS complaint through to the absolute end re Clinical Negligence and Disability Discrimination and i knew my work was far from done till i saw any kind of apology or resolution from Social Services…
Then these NHS emails arrived 24 hour courier signed for. This morning. Between dropping off the boys at nursery and going to our vet for pups last jabs…A heavy A4 parcel delivered by Royal Mail. Very quickly sifted through…and to pick up where i lost track above…holy freaking sheeeeet. The utter tripe in these emails is super intense, mega accussing and wholey stalker-ish and got to be infringing on my one and only right as a creative and passionate (and positively accurate) human-being. My goooooodneessss graciousssss, this is more mega than i ever imagined. They said some awful stuff which i will shortly divulge, they are so screwed, but this all takes my time, energy and emotion to fight. I have the fight today because I’m angry. I might have the fight tomorrow because it settles in, but how long can i keep fighting (right now i know I won’t give up) i worry about the impact on my family of my preoccupied mind and the excessive ‘work’ it takes to fight these f!ckers. I don’t have any legal training, but i know common sense, i know fairness and i know where to start looking, but i can only do so much. I’m now out of my depth with the legal side since these emails arrived today. They have so much to answer for. I will not stop fighting but it would be really refreshing if someone would offer some help, once in a while, when i can’t do all i need to as I’ve already done so much, is there nothing to take the weight of this particular logistical and administrative nightmare off my shoulders?Follow me
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’
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.
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:
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.