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.
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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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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.
