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School prevented diagnosis! Suggestions for 2nd opinion Yorkshire needed?
  • Hi everyone apologies for long post
    Not been around for a while due to finally going through MDA. Previously seen by Paediatrician who said social communication & interaction difficulties. After MDA the Psych & Salt agreed, HFA Aspergers with demand avoidant features, said he was complex as he presented with female features! but would not write this as diagnosis as the school, who had known him 7 weeks said there were no issues. That came from a school who had him 7 weeks and 10 days of that was spent unofficially excluded, excluded or in isolation!

    The MDA team said they couldn't diagnose as the school could challenge it. They did confirm that they had used DSM 5 but didn't confirm what observation schedule he had. He was assessed against a section A criteria & section B criteria.
    He had to meet all of section A and 2 indicators from section B. The psych saw him twice and the salt saw him once.

    His report
    A1 - Psych & Salt agree, but school don't
    A2 - Psych & Salt agree, but school don't.
    A3 - All agree
    B1 & B2 - All agree
    B3 - Pysch & salt agree, but school don't.
    B4 - All agree

    I felt relief that the demand avoidant features had been recognised but angry that everything was hinged on an non medically trained school Senco. Who didn't like us very much.

    We went back to the GP who has agreed we need a second opinion. He asked us to decide which area we would like referring to. Question is where do we go? We would like ENC but I can't see us getting the funding as the NHS is so cash strapped, plus it kind of irks me that there will now be additional costs to the NHS caused through a dumb Senco being a pain. Money they desperately need elsewhere to save lives. Not mention the lengthy waiting times.

    We have been in the system 4 years. Two years where we lived before & started at bottom of list again when we moved to another County. He is 12 now and to think we could have to wait another few years really makes me want to give up. He is now home educated so I'm not sure how they will even assess if a school input is needed for diagnosis.

    Can anyone recommend anywhere outside the Mid Yorks Hospital trust that take NHS referrals but preferably near to Wakefield as we did struggle getting to appointments due to his demand avoidance. I need to strike while the iron is hot with GP as I don't want him thinking we are not wanting to second opinion.

    Thanks for listening and apologies for rambling !


  • PDA_ASD_Parent
    Posts: 4,188
    Hi, I will post a reply with as many suggestions as possible later today.
  • June67
    Posts: 771
    I'm not up on these things but would suggest contacting IPSEA who may be able to suggest where to seek help and advice. Sorry you have been made to go through this. Good luck
  • Holly59
    Posts: 2,586

    Redsquirrel said:

    Hi everyone apologies for long post
    Not been around for a while due to finally going through MDA. Previously seen by Paediatrician who said social communication & interaction difficulties. After MDA the Psych & Salt agreed, HFA Aspergers with demand avoidant features, said he was complex as he presented with female features! but would not write this as diagnosis as the school, who had known him 7 weeks said there were no issues. That came from a school who had him 7 weeks and 10 days of that was spent unofficially excluded, excluded or in isolation!

    The MDA team said they couldn't diagnose as the school could challenge it. They did confirm that they had used DSM 5 but didn't confirm what observation schedule he had. He was assessed against a section A criteria & section B criteria.
    He had to meet all of section A and 2 indicators from section B. The psych saw him twice and the salt saw him once.

    His report
    A1 - Psych & Salt agree, but school don't
    A2 - Psych & Salt agree, but school don't.
    A3 - All agree
    B1 & B2 - All agree
    B3 - Pysch & salt agree, but school don't.
    B4 - All agree

    I felt relief that the demand avoidant features had been recognised but angry that everything was hinged on an non medically trained school Senco. Who didn't like us very much.

    We went back to the GP who has agreed we need a second opinion. He asked us to decide which area we would like referring to. Question is where do we go? We would like ENC but I can't see us getting the funding as the NHS is so cash strapped, plus it kind of irks me that there will now be additional costs to the NHS caused through a dumb Senco being a pain. Money they desperately need elsewhere to save lives. Not mention the lengthy waiting times.

    We have been in the system 4 years. Two years where we lived before & started at bottom of list again when we moved to another County. He is 12 now and to think we could have to wait another few years really makes me want to give up. He is now home educated so I'm not sure how they will even assess if a school input is needed for diagnosis.

    Can anyone recommend anywhere outside the Mid Yorks Hospital trust that take NHS referrals but preferably near to Wakefield as we did struggle getting to appointments due to his demand avoidance. I need to strike while the iron is hot with GP as I don't want him thinking we are not wanting to second opinion.

    Thanks for listening and apologies for rambling !




    Hi

    Welcome to the Forum ,

    Can I suggest you contact this support group . It’s not too far away and they support PDAers .

    http://thejigsawtree.org/

    https://www.zeemaps.com/view?group=1665768&x=-1.363501&y=53.432604&z=13

    There is a Yorkshire based FB Group too .

    https://www.pdasociety.org.uk/families

    The information you need is all contained in this link .

    PDA-ASD - Parent will add to this later .


  • PDA_ASD_Parent
    Posts: 4,188

    Redsquirrel said:

    Hi everyone apologies for long post
    Not been around for a while due to finally going through MDA. Previously seen by Paediatrician who said social communication & interaction difficulties. After MDA the Psych & Salt agreed, HFA Aspergers with demand avoidant features, said he was complex as he presented with female features! but would not write this as diagnosis as the school, who had known him 7 weeks said there were no issues. That came from a school who had him 7 weeks and 10 days of that was spent unofficially excluded, excluded or in isolation!

    The MDA team said they couldn't diagnose as the school could challenge it.



    That's shockingly negligent and I would challenge it immediately in writing. The school are not clinicians and the MDT should know all about masking (if fact the proof that they do is that they said he has the female profile!) The school can absolutely not challenge it as it's not their place to do so. It sounds like a fob-off to me by the NHS service. Excuses, excuses.


    Redsquirrel said:

    We went back to the GP who has agreed we need a second opinion. He asked us to decide which area we would like referring to. Question is where do we go? We would like ENC but I can't see us getting the funding as the NHS is so cash strapped, plus it kind of irks me that there will now be additional costs to the NHS caused through a dumb Senco being a pain. Money they desperately need elsewhere to save lives. Not mention the lengthy waiting times.



    You shouldn't need a 2nd opinion. Go back to the MDT in writing saying you want them to diagnose your son because it is completely unethical to rely on non-clinical staff as that is unheard of and against NHS NICE procedures. Not only that, but it makes no difference to the school whether he is diagnosed or not as they are just meant to provide support based on his needs.


    Redsquirrel said:

    We have been in the system 4 years. Two years where we lived before & started at bottom of list again when we moved to another County. He is 12 now and to think we could have to wait another few years really makes me want to give up. He is now home educated so I'm not sure how they will even assess if a school input is needed for diagnosis.



    NHS NICE guidances states that a child has to be assessed for ASD within 3 months of referral. Anything outside of that is breaching the guidance. As your son has already been so badly failed, it is urgent that he receives his diagnosis and the right support, the Government says early intervention is required! Use that fact and this link in your written response to the MDT:

    https://www.gov.uk/government/publications/early-intervention-the-next-steps--2


    Redsquirrel said:

    Can anyone recommend anywhere outside the Mid Yorks Hospital trust that take NHS referrals but preferably near to Wakefield as we did struggle getting to appointments due to his demand avoidance. I need to strike while the iron is hot with GP as I don't want him thinking we are not wanting to second opinion.



    I personally don't think you need to get an out-of-area second opinion, but if you absolutely must, can you afford privately? It seems too much to put you on another waiting list.

  • Thank you for your responses so far, I'm really really grateful and its given me some new directions.

    Holly59 - I've been around a while but thank you so much for the links you posted, Jigsaw is close so I will venture to see what support they have.

    June67 - Its rather difficult to get a consultation with IPSEA but it was on my to do list.

    PDA_ASD_Parent - I wanted to challenge but wasn't sure if I could or where to challenge as the MDA was done by a Clinical Psych from CAMHS and Salt therapist. Both working for Community paediatrics. So was unsure who to write to? There is also the matter that the verbal feedback to us was not recorded. They wouldn't write their verbal diagnosis as said the school could challenge it. The Psych was really good and saw it straight away as soon as he saw my son.

    The dept has recently had its knuckles rapped by CGC for the lengthy waiting lists so they came up with an action plan to clear the list quick. I believe we were a casualty of this new pathway system. But I will use the link in my complaint.

    If I go private the NHS will probably not accept it, so can't see the point in paying privately. We did enquire at ENC a few years back and it was around £3k and they still had a waiting list.

    If we are added again to a waiting list its possible he will be into adult services by the time we get seen. It's an awful long battle that we should not be having. Maybe we as parents have and are doing too much of a good job. Can't help but think we should not have supported him as well as we have and researched as much as we have. The system is making me so bitter!
  • PDA_ASD_Parent
    Posts: 4,188

    Previously seen by Paediatrician who said social communication & interaction difficulties



    Was that recorded anywhere?

    There is also the matter that the verbal feedback to us was not recorded.



    What did they actually write in his report?

    "Clinical Psych from CAMHS and Salt therapist. Both working for Community paediatrics."



    Send it to the lead paediatrician and copy it to the others.

    But first, I would send them an email which I will pm you about.

    The NHS cannot refuse to accept a private diagnosis. NHS NICE Guidelines also do not state that your diagnosis must be an NHS one.

    http://www.nhs.uk/chq/Pages/2572.aspx?CategoryID=96&SubCategoryID=226

    http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_096576.pdf

    "Private consultations

    If you’ve had a private consultation for tests and diagnosis, you can still have treatment on the NHS. Your position on the NHS waiting list should be the same as if your original consultation was on the NHS."

  • PDA_ASD_Parent
    Posts: 4,188
    Very worthwhile reading about this exact subject matter:

    "When School Staff Refuse to Accept a Diagnosis – some key questions to ask"

    https://itmustbemum.wordpress.com/2017/02/18/when-school-staff-refuse-to-accept-a-diagnosis/

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