Wednesday 15th June 2016
Dear Victoria Derbyshire, the show.
I have been trying to write this letter to you for several weeks. It is only now that I have managed to gain enough emotional and physical motivation to compile the information and examples in one place for your team to look at, I really hope you find the time to read it to the end.
My name is ‘Bee’. I am writing on behalf of myself, my partner and our two children; Toddle is 18 months old and ‘The Boy’ who is 4 years old with a diagnosis of High Functioning Autism and Pathological Demand Avoidance. I’m keen to draw your attention to the situation that my little family find ourselves. I am emailing you for two reasons;
Firstly I want to alert you of the significant injustices encountered during the Diagnostic Assessments for Autism and Pathological Demand Avoidance. Parents face a continuing struggle with the NHS to be listened to and Believed, leading to increasing referrals to Social Services. Child Protection interventions begin when a parent is accused, (wrongly) as I was, of Fabrication and Inducing Illness (previous Munchausen’s by Proxy). The Child Protection ‘Plans’ that are imposed upon families with an un-diagnosed ASD child in light of allegations against parents are deplorable. It is worth highlighting that the ultimate final outcome of these cases is the REMOVAL of Children. The negative way in which the situation is dealt with needs addressing urgently in a Nationwide response, and not each battle tackled locally through the courts.
Secondly, and this is far more personal, I need help. I need to gain some support and legal advice (or action more to the point) to highlight the issues here, and to gain justice. The Authorities need to be held accountable and the staff should face some kind of repercussions, yet this is not happening. Someone needs to challenge the people, processes and policies that have caused us so much heartache as a family, and continue to have so much power with families in a similar situation. I have been following the NHS PALs procedures and in doing so, have discovered incredible ‘malpractice’ that was taking place behind our families back in relation to my sons’ ASD assessment. There seems to be barriers everywhere I turn to gain informed legal advice regarding Defamation, our Human Rights and the Equalities act, all have which I have researched and I am confident have been breached in several ways, and yet because of the cross-over nature of these issues and this being an NHS/Social Services case, no one seems to be able to draw everything together in order to help or even advise us. I’ve contacted Citizen’s Advice as well as Solicitors but I keep getting ‘Clinical Negligence’ or ‘Family Law’ both of which do not cover the extent of the malpractice.
In November 2015, my family were placed on a Section 47 Child Protection Order under the remit of Significant Emotional Harm. With this, we were told that if we did not comply with the Social Service Plans that they would have no problem taking it to court. This is with the intent of removing the children under the category of significant emotional harm. It seems extreme, and to outsiders would seem unlikely to occur but it is unfortunately not the case. The Protection Plans go on for years and children have been removed.
Not ours. Our Child Protection case went on for 6 months and I fought with every part of my being to disprove the allegations made in the unfounded referral. It is unheard of to come of a Child Protection Plan so quickly, this was down to my own hard work and determination, and not down to the realisation or apology of the relevant teams involved. The initial referral was made by an NHS Occupational Therapist and Community Paediatrician of a small-town Child Development Team who were assessing my son for Delayed Concentration, Sensory Processing Difficulties and Emotional Issues, amongst other things.
This letter to you is not just about our case, and not just about PDA. It is about ASD in general, classic Autism, ADHD, ADD, Global Delay, it is an overall battle with the Authorities. I have a hefty complaint with the NHS and one underway with Social Services. It is hard work, and it is draining. This is our experience.
The professionals involved in my son’s care were unable or unwilling to accept what I was telling them about our families difficulties, our son’s difficulties, they were so very extreme in certain situations and I was unable to understand how The Boys’s behaviours presented so differently at home to any assessment environment (as too did the professionals find it hard to ‘believe’). The Boy just didn’t ‘fit’ any criteria, for anything that I was aware of. He was verging on Aspergers, ADHD, but not quite. He had different symptoms and they were being hidden by his own intelligence and charisma the whole time he was under assessment. This was very frustrating because we knew something was atypical about our very little boy, and we knew he required such a lot of extra support, yet no one knew what I was on about, and neither did I…Until one day I stumbled upon a reference to PDA in a free Autism Magazine, it only said that PDA had been officially added to the Autism Spectrum…and I was compelled to google it, “PDA Autism”…There it was in black and white. STARING RIGHT AT ME, EXACTLY what my son ‘had’. I had it, I thought, I printed the paperwork off at the library at my first chance, highlighted in neon exactly the symptoms that were prevalent, and I shared it with CAMHS at our next appointment.
They assessed my son over a period of months, and they didn’t see the problems screaming out at them, PDA. They were not prepared to read the literature I gave them about PDA and they were less inclined to hear my own screams about PDA.
As it transpires, my own yells that I thought were in to the ether, were in fact, being used against me to justify their case of Fabrication.
Through many difficult months, we were defamed clear as day, in writing and in spoken word, intruded upon and had our dignity and confidence taken away. We were frightened to death that the children would be taken away from us, and every knock on the door sent me reeling. I was scared to leave The Boy at nursery as I was worried what Social Services could do in our absence. We had to put on smiles at Christmas concerts and continue baking cakes, buying presents and decorating the house for festivities, and yet the whole time we felt sick inside and at the end of our tether. We were waiting desperately for the date to arrive where we could resume normal life. I was convinced that day would never come.
The FII was disproved at the very first external assessment of my son. The Boy received a positive diagnosis of High Functioning Autism and Pathological Demand Avoidance (ASD & PDA).
I thought that would be the end of it… I was proved innocent and the NHS team were wrong. But it wasn’t as simple as that. The Social Services were like a ‘dog with a bone’ and dragged their feet for months, as in their view they had “two conflicting opinions”.
Here we were presenting them with an Expert diagnosis of The Boy, only 3 months after the NHS team had stated this: Quote CDT Meeting 4/11/15 “ 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.”
Our diagnosis was obtained via Private Assessment with very well established ASD/PDA Experts that we paid for ourselves out of a desperate need to clear our names, we were both so sure that The Boy had the ASD called PDA. The NHS team that we were under were not qualified to make a non-diagnosis of ASD/PDA as they did so clearly in the child development team meeting (above). They adamantly blamed high levels of anxiety that were attributed to parents and not in the slightest bit interested that anxiety is in fact the main characteristic of a PDA child. It is important to note that the NHS non-diagnosis, was NOT NICE compliant and the NHS have since admitted so. This non-diagnosis was fuelled by their misinterpretation of facts, their misguided personal opinions and their arrogance to assume that they knew best..not once did the Team consider a second opinion or referring to a PDA specialist, even with my absolute belief that The Boy had this condition, they denied him access to appropriate care and therefore ongoing appropriate treatment. And then of course, they went to Social Services with what information they thought they had to accuse us of FII.
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 got 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 were following as I do not believe both can co-exist. If I were fabricating it, there is no evidence that I was “gaining” anything from this. And it is not possible to “induce/inflict” ASD on anyone. They also included our then One Year old son in the plan who they have never encountered, and who has no difficulties. We were accused with no way out. Every “Recommendation’ that was made in the ‘Plan’ was to prohibit us clearing our names, we were told that The Boy or Toddle, could not undergo any further assessments, and they worked on the basis that the NHS were right. Which they were not.
At no point did the NHS team or Social Services consider gaining that a second opinion before taking the serious steps to Child Protection proceedings even though a second opinion was recommended by another Paediatrician. At no point did the Social Services acknowledge the glaring ethical issues in the chronology and referral they took from the NHS referrer (who I had previously made a complaint about personally and professionally). They were blinded by subjective staff opinions of me and they brought in my own health and my artistic practice to emphasise the fact that there was nothing wrong with my son, they were concentrating very much on assessing my state rather than The Boy’s which is apparent in the evidence I now have. If they had been looking closer at the symptoms that The Boy displayed and aligned them with a PDA criteria, they should have quickly either recognised the ASD or gone on to refer to an expert. Which is what i would have been asking the Commissioners to fund had I not been suddenly accused of FII and had the children placed on a Section 47 Child Protection Order on the grounds of Significant Emotional Harm.
In the process of assessing my son, the NHS team have said some very derogatory things about me and my partner. Not just that I was fabricating. It goes way beyond that. They have disclosed very personal and private details in order to substantiate their un-founded opinion of my FII and they have been openly very personal and subjective about me, my mental health, my profession as an artist/writer and my ‘social status’ in wider meetings with strangers present. They were acting as though I was guilty before I had a chance to disprove their claim. An NHS Nursery Nurse looked up my work website on the internet because she “found me interesting” and what she found she interpreted in her own way and disclosed my work as a Safeguarding issue, yet against the NHS own policy, they didn’t disclose this to me at the time – a massive 8 months before the Child Protection action was taken.
I have since gained access to a whole lot more evidence and the list of issues is extensive. There are so many errors I can not get them all down here.
I admit that this is a complex case. I have done as much work as I can, but it has gone far beyond what I am capable of dealing with now with relation to legal terms and accessing justice. I have done the leg work, but am now out of my depth.
PDA is not rare, but rarely understood, and rarely diagnosed, it is so very high functioning that the children can appear ‘normal’ and their sophisticated methods of masking make ‘seeing’ PDA hard and in turn and difficult to pin down. Remembering that ASD is in fact an invisible disability, and everything about the ASD can be variable and PDA in particular has it’s own unusual characteristics, all the medical evidence was there for the NHS team to see. They even acknowledged The Boy’s difficulties accurately to some extent, yet they chose to not attribute it to an ASD, but to accuse us of FII.
I don’t feel that the appropriate legal support is available to fight organisations on this scale. I am struggling to find an organisation with sufficient legal knowledge that understands the extent of the allegations and the vast amount of evidence I have.
If we were a wealthy family, a person of media interest, or we had a ‘sensational’ story behind us – I feel our battle would be so much easier. We could afford to access the legal support we require to get justice, or have it offered freely, we would be listened to and our story could make a difference. As a family, I hope we can move forward from this, but we will never forget. However, my children will never be rid of this, it is on their records now, FOREVER, and it can not be eradicated. It will appear when ever there is any Authority involvement, it is even mentioned on The Boy’s new and ongoing NHS notes, or should we ever require the local authority disability team, it’s all there as a mark against our name, casting shadows on our parenting and our family as a whole. This is something that will NEVER go away, and has given us such bad experiences that we are afraid to ever go to the Local Authority teams for any disability support in the future, as it was asking for this support that got me accused of FII in the first place.
Examples of recent media coverage:
Melanie Sykes was recently in the press regarding her 11 year old Autistic Son not being able to obtain a suitable mainstream education placement. This is extremely common in the ASD community, more so if the child is PDA and undiagnosed. Yet, no one else’s story makes the press…but a ‘celebrity’ story makes the news. Gaining the appropriate educational support cannot even begin for ordinary families until a correct diagnosis is obtained. Melanie Sykes’s story is commonplace and uninteresting and yet still grabs media attention.
The Baker Small Law Firm story has been grabbing the attention of Bloggers and Social Media since the weekend, Yesterday the Guardian picked up on it. This is a terrible way for a company who represent the Local Authorities to behave. Families are after the best for their children, always. And it is this kind of ignorance and disrespect for families of Additional Needs children that is rampant amongst the Authorities. It is totally unacceptable. It has highlighted several issues and made the press, and yet again, this is not uncommon for it to be going on in the silence of offices, and via staff emails.
I was made aware yesterday of a Change petition taking place of a single mother of 4 who has been ‘electronically tagged’ because her ‘disabled son’ will not attend school. The information is limited, it is not clear whether the child has a diagnosis, or what the other surrounding factors are in this woman’s personal case. We do not know the full extent of this story but the ‘tag’ is taking precedence and the petition and gaining support. It is emotive and sensational. It seems unjust yes, but we do not know enough about it.
Then, outside of the Additional Needs world, there is Chelsea Football Club/Dr Carneiro’s case regarding her rejection of the settlement offer of £1.2 million. This kind of settlement in these kind of cases, makes BIG money, and generates huge media attention. Yet in all fairness, her predicament will have caused low-level stress in comparison to our own families’ situation and what we have lost as a result. We have lost, time, money and self-esteem in all this, and potentially could have lost both of our children, but who will compensate us for our heartbreak and hardship? No one will listen.
As it happens, myself and My Partner are an ordinary, low-income family who have been screwed over by the very teams we employ as a Nation to help us in our times need, be it medical or social. We mean very little to the media and I can’t even generate much interest on my own change.org petition as our story isn’t sensational enough. We, like many other families who have been treated in this unfair and defamatory way are simply invisible to the outside world, whilst being swamped by reports and complaints and masses of evidence to take action against these Professions, we have our hands tied financially and emotionally.
A bit of background about our case:
Early in 2015 I placed a complaint about the particular Consultant Paediatrician involved with my son as I felt he was not a competent judge of the situation, his manner was unprofessional and his approach awful. The complaint was articulate and factual and he decided to fob me off and at that point I chose concentrate on my sons’s care rather than fight this person via letter…when I was ignored again and my concerns were not addressed I reiterated my feelings surrounding his incompetence by email. In turn, he was no longer The Boy’s paediatrician, and as a result of the complaint against him and his personal opinions about parental “expectations” this very doctor suggested Child Protection. This is evidenced in the Chronology that the NHS submitted to the Social Services and is an input on the same entry! I thought from the very outset that Dr HA’s involvement in the Referral was suspect and I felt it was not good practice for him to have been involved in any safeguarding concerns as I had made a personal and professional complaint against him. Surely this would lead anyone to question the impartiality of the person and whether it was appropriate for him to make a diagnosis of FII. However, to find out by the evidence I have now obtained, that he in fact quite obviously stated Child Protection on the same day as he received my follow up email chasing the complaint reply, well…this smacks of discrimination based on my making a complaint. I am currently going
through the NHS NICE Guidelines for FII and it seems that they have not been NICE compliant with the actions taken, much like they weren’t with the diagnostic process for ASD.
I placed an Access to Personal Data Request with the NHS teams, and have now been given 52 pages of emails that were sent between the Team involved with The Boy’s assessment. The emails are unbelievable. This complaint I had originally placed was about the NHS lack of ability to identify The Boy’s ASD, their actions to take to Child Protection and Dr HA’s involvement with it, and here I am faced with a bulk load of hideous emails focussing on me, and not my son. My mental health, my profession as an artist and writer, a nursery nurse was scouring the internet on my work profile and website and chose to take it to safeguarding. I was not made aware of this Safeguarding issue at the time, only by my accessing emails have I been made aware of it. I have been informed that the NHS have a duty to inform parents of safeguarding issues as they arise, and the only circumstance that this isn’t adhered to is in a case of FII. However, they did not inform me of this intrusion in to my personal life until i ‘found’ it last month, yet it occurred in March 2015! The Nursery Nurse in question was disturbed by her interpretation of my art and written work. She had looked me up via Facebook as she found me “interesting”. She didn’t like what she found that makes me so “interesting”. Her interpretation of my professional persona led her to take safeguarding actions and this then led to many other conversations surrounding my mental health.
Her assessment of my son was secondary and it was her interpretation of my artwork that will have influenced her fellow team members as she shared her views by email on 4/3/15, and discussed with the Safeguarding Team also on 4/3/15 and unbeknownst to me before my arrival at a multi-team meeting on 15/4/15.
Her comments were:
“I have come across a couple of web sites that may shed a little light on the background of Bee (mom)” “…comments and photos are quite revealing as a possible insight to her state of mind” “It may indicate that Bee might need some psychological input.”
I have approached the NHS Pals department about this and an investigation has identified errors. They have ‘apologised’ but still no one is being held accountable and there are no ramifications. I have been destroyed by reading these comments about me, but this is just one small section. Prior to this, the Child Development Team Members were sending the emails below. This is an extract of a selection of emails and comments that I have highlighted to the NHS for their comments, I am still waiting for a reply to these, as they again have been based on personal opinions and their outright opinion that The Boy DID NOT have ASD. Which of course, he does…please bear in mind that my son does in fact have the ASD which is fuelled by anxiety and myself and my partner were very well placed to support his needs as we recognised what they were to a tee. But the professionals were incapable of seeing it. Their opinions were subjective and personal about me, and My Partner and are often not based on fact at all. This to me, supports my case that they were discriminating against us on many levels and being highly disrespectful in their ill-informed and incorrect comments leading to dreadful accusations and a gut-wrenching read.
Emma P OT to Dr HA Consultant Paediatrician.
(SHE refers to me, when we wanted our anxious son to access Camhs)
“She needs psychological support.”
“She finds it incredibly difficult to listen to parenting advice so i think Jo (clinical Psychologist) would be good for her.”
Email 15/10/15 14:16
Sandra G to Emma P
Comments such as “mom needs to ignore him a bit more” are unhelpful, unnecessary and not medical or insightful.
“I can’t see she’ll get the sort of house she wants” Why is this opinion being made or shared? It is not her job to comment on my finances or house requirements.
“I’m a bit paranoid about going through it with mom” Disgusting and unprofessional lack of respect for me and The Boy’s needs. She would have known I would challenge their opinions on what they see/and what was happening as typical of PDA.
* Email 15/10/15
Sandra G to Emma P
“Sorry Emma, i left you to do most of the talking. I feel absolutely drained after that.” This email must have been sent almost immediately upon Sandra’s arrival back at the office from our home visit. This is disrespectful and unprofessional. There is no need to be like this about a visit, And in writing too. If Sandra did feel “drained” as she states, then this is surely because of the colluding they were doing behind our backs, the conversations that had gone before, and her personal feelings on me as mother. This is an inappropriate comment, but one i am sure she did genuinely feel, as if i’d been sitting in a persons home, having said and thought all the things that have been evidenced in these emails, i too would feel drained by the effort to maintain any sense of decorum.
Emma P to Sandra G
The content of this email highlights the way the professionals were trying to talk me down, and ‘get through to me’. The meeting at our home had not long finished and I was not thinking it was successful as they state inn the email, I once again felt let down as i was only discussing Mobility because we essentially held a chance of getting it for The Boy. For a start, Emma P, seems to not understand the DLA system. When a child who gets DLA turns 3 years old, they are automatically sent paperwork to fill in for mobility element. And in what i was reading based on the DWP criteria, The Boy fitted it. Yet OT were not prepared to support it as she didn’t feel The Boy was hyper, sensory etc. Her comment “it doesn’t seem it’s the mobility claim per se they want, it’s just the additional money this would generate.” This is what the DLA mobility element is, it is money. It doesn’t come in any other form unless you qualify for Motability, which is just one small part of what the money goes towards. Again this highlight Emma doesn’t know what exactly she is talking about as Mobility is money. And of course, if a child is entitled to something to make their life easier, then that should be excepted and not an opinion from OT.
“Again today I found The Boy to be quite a typical little boy”. Just highlights the contradiction of information she shared with Dr Walter (investigating officer re the 1st complaint) recently for the Child Protection Review meeting report. And obviously, in light of the diagnosis, not a typical little boy, but one with sensory processing issues, and these she was not expert enough to recognise.
“I think the meeting will be interesting. I’m not sure what she will make of us not giving a diagnosis as she is so sure he has PDA.” Once again, this is all about me. And the fact that on 15th October, Emma was stating that they were not going to give a diagnosis, means that way before the CDT meeting on 4th November, without any appropriate Paediatric consultant involved, and no formal meeting having taken place, decisions were well and truly made, making comments like this. Never was it on their mind to forward The Boy’s case to an expert in PDA, as i was so sure he had, why was this not even considered? knowing that i would react badly to a non-diagnosis, you’d have thought the team would have gone out of their way to make the meeting/diagnosis water-tight.
* Email 13/11/15
13:20 Dr Mills to Dr HA
“these cases are always really tricky”
“A review by another doctor including the locum may be useful as ‘second opinions’ are useful.” ************
The Occupational Therapist and the Paediatrician stated “She has very strong distorted views around social class and will not allow The Boy in to the garden incase he hears the neighbours next door whom she feels are of a lesser social class than her.”
She goes on to state that the Paediatrician and herself had “longstanding concerns about this mother and her distorted views around her child’s perceived difficulties”
There is so much more, and I am happy to share all the documents with you. Bearing in mind that we do have a child with ASD, every decision I have ever made regarding our family has been based on genuine need and required support. Nothing that has been documented by professionals is accurate and can be disproven at every angle. There are other professionals and family members who can identify the outright lies within the documents and the way in which certain information has been distorted by the professionals in order to fit a case of FII. They still insist that they acted in the right way, but in light of everything I have read and all I have in front of me, they did not. In light of The Boy’s positive diagnosis, should they have behaved like this? In light of my own mental health condition, is this how they should have been talking about a mother? They were so preoccupied in proving their point they lost track of the real issue at hand and that was The Boy and his care, and IDENTIFYING HIS NEED was the only way they could eliminate a case of FII and they chose not to.
We came off Child Protection Plan at the end of April 2016. This was at a suspended Children’s Social Services review meeting, postponed by almost two months. The Social Services did this so they could scrutinise the Private Assessment and they asked for the NHS opinion on this, the Social Services manager insisted that we shared the diagnostic reports with the previous team for their insight. Whilst I had a complaint in with the NHS at the time, and I contacted my MP also, the NHS decided that it was not their place to comment. Yet the Social Services were digging their heels in wanting an opposing opinion on the diagnosis. The Social Services view did not alter, they were insisting that they had contradicting information, even though as the NHS agreed their ‘diagnosis’ was NOT NICE compliant, and our Private Assessment WAS NICE Compliant. The Social Services Manager, who took a particular strong stance against anything we said, was jaded in her role and not open to being in the wrong, was still looking for an edge right up until the very last day.
The Social Services final report that relieves us of the Child Protection order, states “at this time there is insufficient evidence to continue Child Protection”. This is their way of avoiding the fact that they were incorrect, that they had accused us of something false. They are simply stating that there isn’t enough evidence to continue! This is not the same as being taken off Child protection for never having done anything wrong.
This whole thing is still an open case as far as I am concerned. Until someone removes all record of this awful incident, and we get back the time we lost as a family, until the NHS and Social Services apologise to us and take serious action against the staff for their incompetence, defamation and the hurt that their accusations caused, I will never be able to move on.
I hope that this all makes sense to someone on the outside, as I am so familiar with the information it all blurs in to one for me. This is why my family, like many others that endure our experience, needs the support to unpick and emphasise all the issues I bring up and hopefully you might be able to help us in doing so.
I have attached my two letters to the MP at the time of the case, it might be a briefer summary of what we were going through at the time, as well as some information about PDA that directly states the kind of support that these children and parents require. All of which was being thrown in our faces by the Social Services. I am even happy to disclose The Boy’s Private diagnostic reports and the NHS ‘reports’ from the time if they help you, help us. I really need to take action. I get parents emailing me on my personal/anonymous Blog and Facebook page, all of whom are in the same predicament and I know not what to say to them when they are facing Child Protection too, or court or even worse, I see tales of removals on support pages and it is simply getting out of hand.
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