Follow-up from my Response to WWC Overview & Scrutiny Review

I’m told that tomorrow, Worcester News are publishing an Article relating to my original review on the Overview and Scrutiny Panel that i previously posted (Here) – The comments made to the Paper were made a while ago now, in a typically un-timley manner, since I that time i have been fortunate to gain some more information…In light of this, i’m adding my follow-up that i wrote after a good discussion about the intentions behind the WCC Outcomes. I’ll go further in to it, and i really hope to work with the Worc’s Health and Care Trust directly to smooth out some of these issues, however, in the meantime, here are my (as yet unedited) ramblings.

x x x x x x x x

On Friday I was lucky enough to meet with the Children’s Clinical Services Manager, who is the lead of the Umbrella Pathway, I say lucky as it was nice to be able to get a meeting with someone who has influence over the decisions that impact on us every day within Worcestershire. It shouldn’t be down to luck, however, my professional position blurred things slightly and I think, initially, it felt to my colleague as more of an ambush. That was of course not my intention at all, and perhaps due to my own formal manner (an ASD trait of mine), my contact came across as one thing, rather than another. However, ambush or not, the intent was true and as a Parent who is impacted by decisions made and/or signed off by the LD Lead for Children’s Services, it was an opportunity that I grabbed fully.

The one big issue that came out of the meeting is that of funding, of course it’s funding.

The CCG are telling the Trust what they need to do and where to make savings. This is fine, as the CCG hold the pot of money, but how much push-back is given when this decision is not the best one for the Trust or it’s Service Users? If the Trust go along blindly without due consideration for those they serve in a medical and care capacity, then how can we parents know that the children are safe in their hands? When something comes down to funding, corners are eventually cut. In this case, the WCC have put a case forward in their Overview and Scrutiny Panel Report that highlights to me, where these cuts are being put in, without an idea of the future and ongoing cost implications of trying to change the process for the worse here, at this early stage of accessing an assessment.

I’d like to see the figures, it seems sensible that the figures to back up the changes to an existing process are shared to enable transparency.

The figures I’m interested in is that of the existing ‘pot of money’ and how it is divvied up along the ‘pathway’. I was interested to learn and surprised actually, that there is no one pot of money for the umbrella pathway. It is not held specifically for the Autism Process in either the Trust Mental Health Services, or Learning Disability services. It is allocated to each individual team that has involvement and inputs in to the assessment process. This doesn’t make any sense to me, and it is information that needs exploring further.

In terms of finances and value for money, it also seems sensible that we get an overview of the total cost of a child going through the current pathway, who is paid what, when?

I would personally like to see this, so I can assess whether the current pathway is good value for money, and from a parent’s perspective, pull out the unnecessary elements of the pathway and make way for the parts that need more emphasis placing on them.

It is my opinion, and until I have actual costs I can only speculate, that the current process of following the NHS Pathway is far more ineffective and less financially viable than a parent who manages to go down the Private Assessment route. As a ballpark figure, a Private Assessment might cost a parent £2000 – £3000 to obtain a thorough assessment by an Expert Paediatrician, Clinical Psychologist and/or Speech and Language Therapist. These are experts in their field as many have reached a senior level in the NHS and left the public sector to pursue Private Practice and provide a more focussed Neurodevelopmental service. In that Assessment, everything that is considered over months and years by the NHS pathway, is also considered but in a more appropriate setting, nothing is left out, there are no short cuts in the Assessment process Private or Public. And yet, the time taken is better for the family, it is accurate as carried out by Neurodevelopmental specialists and the relevant issues are measured accordingly, allowing the Specialists to join the dots and lot sooner and make a more accurate opinion, unlike the current fragmented NHS process carried out by ‘jack and Jill’s of all trades’ in terms of Children’s health where problems occur in several professional holding subjective opinions and the facts get lost amongst the ‘dot to dot’. And how much does each one of these appointments cost to carry out (time, admin, paperwork, professional, room hire, rates etc)? I wonder if the whole process was totted up, how much would that be? And then add in the extra pressures that can arise from not having an assessment at all or making incorrect allegations of parenting issues etc, then these costs (again room hire, professionals time, cost of running a triple p course, contacting social services, implementing safeguarding staff?) and then consider the cost absorbed by schools and nurseries (staff, meetings, time out of classroom) and EHCP tribunals and all that goes in to these, and then there is picking up the tab on mental health treatment for those suffering additional anxiety, depression, PTSD and medicating these symptoms? Would all of this really be cheaper than listening and believing the parents with regards to the severity of the ASD symptoms; cheaper than the voice of a second opinion by an expert Specialist, and offering the best diagnostic assessment possible in the very first place?

Secondly, I feel it is important to note that I felt more comforted by the information I gained about the report that I thought I would. Something that is apparent is the language in the report and that the emphasis of the report is based on parenting. According to the Service Lead, the push for support is coming from the Schools and not the parents; this surprised me, as it isn’t mentioned.

Through all of the interventions and graduated responses mentioned in the report, they do not focus on the additional support in schools, it does not focus on the Teachers pushing for additional funding to sustain the classroom support that is required when a child has a (potential) Autism condition, and it does focus on Parenting issues, behaviour difficulties, and an array of other diagnostic labels, than actually once joined together could quite easily be a case of ASD PDA.

If the focus is not on a diagnosis, or a label, then why go ahead and look for other labels – as if the Autism one is off-limits?

My concerns remain, as the new focus on alleviating the front door pressure of a struggling system is not going to resolve the fact that the children still need an expert assessment – of which I am not convinced they get through the current pathway. The lack of understanding about accessing support is rife, and the wider public and professionals need to understand the consequences of NOT diagnosing an Autism Condition. The fall-out is emotional to family, and ultimately financial to the Public services, when incorrect diagnoses are made or unmade, and the families end up fighting the system through courts, be it child protection cases, Education Tribunals, follow-up health care for traumatised youngsters and families who have been impacted negatively by their experiences of the route that took them to the courts in the first place.

We know that the Local Authority have limited budgets, yet the schools are asking for help which isn’t being implemented and this concern isn’t being shared amongst parents. The money spent by the Local Authority fighting back at Parents, could be better spent in giving that support required. And how do we know someone needs support? We assess, diagnose and believe parents.

In PMQs on Weds 22nd Feb, Theresa May PM answered a question surrounding Learning Disabilities and she said that the Government “will be introducing Education, Health and Care Plans”, and my question to her is, why “introducing” and not acknowledge that they actually ALREADY exist and are like fairy dust to obtain? And if the Government are taking an active role in pushing the EHCPs, how do they expect to provide them to children who have not had an assessment?

This topic of ‘assessment versus diagnosis versus need’ is too vague for parents, teachers and children who are growing to adults as we speak.

If the schools need support, they should get it, if the parents need support they should get it, early intervention is key – the Trust gets that right at least, however, their perception of what early intervention is, what form it takes, and who can access it, is drastically off the mark.

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Overview & Scrutiny Committee: Autism Assessments in Worcestershire

Response to: Worcestershire County Council’s Overview and Scrutiny Committee on Autism.

Scrutin Committee 28.2.18 Assessment of Children and Young People who may have Autism

With reference to the Review document attached, I appreciate that there are more referrals for ASD coming to light than ever before, and I, more than most, can be cynical about the extent of suspected ASD being banded around. I admit that I am protective of the ‘label’ that gets my 5 year old son his support and, as a late diagnosed adult; I hold my hands up to being blunt in regards to ASD and what that truly means especially when it coexists with another medical or learning disability.

The report suggests various reasons for increased referral rates, the first being increased awareness. This is a good thing, without a doubt – it means people can start understanding the variety of Autism Conditions and know what to look out for in their own children. This should not in any way be acted upon negatively, which unfortunately Worcestershire County Council does in their Overview and Scrutiny Committee outcome on ASD.

Another reason for increased referrals, apparently there is  “anecdotal evidence that some people may incorrectly believe it acts as an automatic ‘gateway’ to support and services” How can they reference subjective opinion as evidence without quantifying it?

The problem here is when a parent asks for help with their ASD child, they think that there must be some support and help available, but in actual fact, there is not and this is down to the Local Authority. Parents are at their whit’s end fighting everyone to get them to understand and they, as I did, naively think that someone can help, when the truth is, parents are on their own. This ‘gateway’ to support is a mystical one that does not exist, and services that are impossible to access with a child who has a High Functioning Autism Condition

I’m concerned about the content of the report, but the recommendations made actually frighten me. WCC state they will look for alternative reasons, and to use approaches and interventions for ASD, and this is a worry, as it appears that no lessons have been learnt since the experience we had, and instead the Authorities have taken a massive step backwards for all Invisible Disabilities, particularly High-Functioning ones including Autism.

The long term impact on undiagnosed children and adults is obvious to those of us that live with the condition, and although I feel very sad that this outcome will leave more high functioning autistic people at risk of other medical conditions as a result, such as increased anxiety and depression, the impact on their ‘apparent’ ability to cope in education and the fall-out of them not fulfilling their potential in to adulthood which will ultimately have its own cost implications to the NHS and Local Authorities, it is not this that concerns me most.

I’m massively worried about the impact of the decision to start looking to ‘courses’ as a resolution for the symptoms, as this will not work. They do not offer the support needed and they do not fix ASD symptoms, in fact in a case of Pathological Demand Avoidance these types of ‘approaches’ can create a very unhappy and unwell child as a result.

The main recommendation from the report is based totally on weeding out the cases that will not meet their own criteria and looking to place the blame at any door, other than that of the Autism Pathway. What about the cases who have genuine High Functioning, invisible disability that can only be extracted by an Expert Professional? There is no excuse to cherry pick who gets an assessment and who does not. These are children with individual needs. In what other condition, would it ever be acceptable to not diagnose? It is absolutely unacceptable to put one child’s disability over another, simply because it is too expensive to sustain the current processes in place.

Parents face a continuing struggle with the NHS to be listened to and believed as it is, 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).

We hear a lot of parents talk about long waiting times for Autism Assessments, ASD Diagnoses, and the battle to gain support. My experience is that in order to even access a fair assessment, a diagnosis, the educational and emotional support that should follow for children, parents are treated like perpetrators of some abuse or worse, treated like they don’t have the knowledge or ability to pick out ‘ordinary’ and ‘unusual’ behaviours in their own children. An ask for help for an undiagnosed child leads to judgements on parenting and worse. This is how important accessing an early, correct and expert diagnosis is in terms of the support available. It is not true that the support is offered on needs of the child, because those needs are put down to other aspects of behaviour, it is true however, that the support offered is a way of teasing out parental issues, using archaic attitudes and parenting strategies which in fact makes the whole assessment process unbearable for child and family.


Review Paperwork and meeting details can be found here:  http://worcestershire.moderngov.co.uk/ieListDocuments.aspx?CId=134&MId=2165&Ver=4

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ACCUSED: An Autism Mother – the Art Exhibition

So here it is, the exhibition is now live and official.


‘ACCUSED: AN AUTISM MOTHER’ at the Artrix Arts Centre February 2017.

Supported by Arts Council England and Worcestershire County Council

Exhibition:
ACCUSED: An Autism Mother
Bernadette Louise creates a spectacle of oversized Healthcare posters emphasising the ‘invisible’ symptoms of Autism Spectrum Disorder, Pathological Demand Avoidance. In an honest response to the Authorities who accused her of Fabricating and Inducing her Son’s ASD, she uses documentary mobile phone images and direct quotes from the assessment process to highlight a desperate need for PDA Awareness. Quickly the professionals focussed on her as Mother, instead of the Child’s symptoms they were faced with. Bernadette intends to highlight the contradictions and accusations that caused the NHS to refer to Children’s Services resulting in a Child Protection
order. Through her Art and Spoken Word event Bernadette exposes the true harm caused by the Authorities to families with ‘unseen disabilities’.

Spoken word event:
An evening of poetry and spoken word including performances by those who are on and support people on the Autism Spectrum. Featuring the popular Autism Vlogger, ‘Autistic Genius’ and visceral Artist Bernadette Louise.

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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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Sign the Petition

NHS & Social Services Understand parents of Autism/PDA Pathological Demand Avoidance

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

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https://www.change.org/p/alistair-burt-mp-nhs-social-services-understand-parents-of-autism-pda-pathological-demand-avoidance?recruiter=533936555&utm_source=share_petition&utm_medium=copylink

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