This is the follow up letter i sent to the MP..i think it highlights the ongoing difficulties with the situation as they were then in May 2016, one month after we came off Child Protection Order.
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Dear Karen Lumley MP
Thank you for taking the time to see me tomorrow. As I explained on the telephone to your office, and also in previous emails, the Child Protection Conference with Children’s services was postponed due to the Social Services wanting to look further in to the private assessments that the Boy underwent, that subsequently determined that he does in fact have an ASD/PDA as we suspected. The attitude of the Social Work manager during this time was far from positive and they were desperately trying to get the NHS professionals opinion on the assessments (with an intent to discredit them i am sure in light of her comments). I will be pursuing that as a part of the larger complaint i have begun regarding the whole child protection system and the uptake of the referral. As you are aware, we received a reply from a Social Work Manager regarding the original concerns that i shared with you, i felt that it was less than satisfactory and intended to respond before now, however circumstances have been such that i have not had the physical or emotional capacity to do so. There is such a lot of work involved in the social/early help hub/city council complaint that it will take some time to get it all down. We have since come off Child Protection, almost unheard of at the first review as we did. Clearly a no-brainer that we were falsely accused and this needs to be dealt with as a matter of utmost importance by all parties. We were innocent and allegations were made, cruel and detrimental words and actions against us, that were not acceptable and will not be forgotten.
In the meantime however, i have been pursuing the NHS PALs complaint and we seem to making progress.
PALS have admitted some fault with relation to the NICE compliance and the way in which the final diagnosis was dealt with. It is not enough though. They will be responding to my first complaint in due course, and in this time of waiting for the outcome, many new issues have arisen. One being emails I gained through Access to Data route and the extent of the malpractice from CDT staff is apparent. This has triggered a new PALS investigation. It has already highlighted that staff involved have told lies in the interim investigation as they are contradicting themselves even in the past couple of weeks. People are backtracking and covering themselves denying the reasons for the referral to CP even though we have emails to disprove their new statements. I feel this needs to be dealt with independently to get an impartial viewpoint. I have also discovered through these new emails, that a witch-hunt mentally was rampant and they were hounding me personally and professionally to give weight to their misguided opinions that Cash did not have an ASD as far back as March 2015 when no diagnosis was even considered by the NHS CDT until November 2015. PALS are taking this very seriously, but we are yet to receive a reply. I have copied you the email about that for your information, as i feel it imperative that you are aware of the kind of actions NHS staff, whom we trust and are paid from tax payers money, treat parents, and that it seems acceptable to them to question, blame and even stalk those parents if they are not making the right noises or ticking those boxes that are ‘typical’ of autism. I am sorry that this happened to my family, but it has to stop now. I am not prepared to see more families put through what we have gone through in the guise of assessment and no-asd-diagnosis. Since going through our ordeal i have become increasingly aware of similar situations happening across the country, but also, closer to home in Redditch. As our MP i hope that you can bring these injustices to the foreground and push the Minister of State for Community and Social Care to take note and realise urgently that things need to change. PDA needs to be recognised nationally as a diagnosed Autism Spectrum Disorder and it is NOT a parental issue but a Neurodevelopmental one.
I feel my concerns cross over various aspects of your work. Locally, I am alerting you to the actions of NHS and Social Services staff. But Nationally, things need to change. and here is why… When the postponed Child Protection review finally did go ahead, we were taken off Child Protection. Everyone was in agreement that there was no cause for concern. Far from it. Yet, we were dumped at that point. I had been asking for support with a handful of things, including Housing, Mobility, Direct Payments (to secure The boy’s continued care and much needed respite over the school holidays) and all these requests that were originally met with negativity from professionals, was the reason i was accused of Fabrication in the first instance. Now, we have been dragged through the humiliating ordeal of CP and all of the investigations and accusations it brought on, only to be in a worse position than we were before. We still have none of the support i asked for and we are not likely to get it as a result of the CP bringing us such horrible experiences, we ideally would want nothing to with the Social Services again. However, this means we lose out on support that The Boy deserves. He deserves everything that he is entitled to, as we are as his mother, father and brother too. We all have our part in this and it has all been forgotten. Everything that the Boy is entitled to caused the Professionals to accuse me, and yet, with that Fabrication disproved, we STILL have none of the support. We are worse off because i have since been made redundant and have not been able to use my 3 months notice period for positive gains, instead i have been continually emotionally unwell whilst fighting this ongoing battle.
In The Expert Psychologists diagnostic report of The Boy she extended with information about PDA, in which it states “Many parents with children who have PDA find their parenting criticised”…it goes on, but this has got to change. It cannot be the first response to an unknown entity such as PDA. It exists, it has been researched for over 30 years and is not going to go away, and it has been acknowledged by the National Autistic Society, so why are we parents fighting the NHS national about this condition? The report goes on to state “It is important to recognise that these children have a hidden disability and often appear ‘normal’ to others. Many parents of children with PDA feel that they have been wrongly accused of poor parenting through lack of understanding about the condition. These parents will need a lot of support, as their children can often present severe behavioural challenges.”
Now, to a point, i am prepared to accept that it is the lack of Professional understanding of PDA that has taken us through this CP ordeal as i know it is an attitude, a policy, deep within the ‘Services’ that needs to change…yet, i did highlight PDA to the professionals as soon as i became aware of it, that ‘Lightbulb moment’, professionals claimed to be aware of it’s existence too yet they decided not to concentrate their investigations on my son, but on me instead. I can let that go (temporarily) as CDT ignorance, arrogance and malpractice to be dealt with elsewhere. However, i am not prepared to accept the fact that the very nature of the condition that the boy has emphasises the need for parental support and it is a need that has been constantly ignored from the outset. That is something that does need to change immediately for my family. All of the things i was asking for help with, we have been trying to contain during this CP experience, and at a time when we had no clinical support, even the Boy’s education has suffered (he has no school placement due to having no medical evidence). I have tried to pick up the pieces where i can, but the issues i discussed with you in person previously and too highlighted to the professionals involved with the Boy’s care are still as prevalent today as they always were. Yet we are alone in this, even though i asked long ago for help, it has not come in the way it should have. And still we are in the same predicament as we were this time last year, but a year on, we are emotionally and physically tired, The boy has no school placement and we have nothing that i was working toward when we first met.
I do hope this is clear and i do hope that you can offer some advice on where to go next and how we can change the negative attitudes that have and continue to cause us so much difficulty.
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