I will not let a broken system break my little boy.

I will not let a broken system break my little boy.

We live on the border between two counties. All my son’s medical care is under Worcestershire. In September, he will begin primary school in Gloucestershire and, because of this, he is undergoing the EHCP process in Gloucestershire.

We applied for an EHCP ourselves because no county would take responsibility. Worcestershire said they were not sure how to go about it. Gloucestershire had never heard of him.

Today, I was told by a medical professional, someone involved in the EHCP process, to ring the Gloucestershire SEN team to double-check they had collected the information from Worcestershire on my son because, and I quote, ‘I would not trust the system.’ Lord knows, I have had enough experience of the system to know that this is a wise assumption.

And so I phoned them. The person I spoke told me that they had sent out letters to all the Gloucestershire agencies who would usually be involved in the care of a child with autism. Naturally, they have received replies to say that they were not responsible for the care of my son, because he was under a Worcestershire paediatrician, a Worcestershire speech and language therapist, a Worcestershire occupational therapist.

Of course, when we applied for the EHCP, I said this. I sent them all the contact details for all the appropriate people in Worcestershire. They have that information at their fingertips. But there is a process to follow – of course.

Still following?

“Ok. Right.” I said “So have the Worcestershire paediatrician and speech and language and occupational therapy all been contacted yet?”

“Er….no.”

“Ok…are they being contacted?”

“No. We do not actually read the reports. We just file them.”

“I’m sorry… so who does read them? You are telling me that no one is going to request the information that is actually needed to assess my son?”

“I am sorry… er… I am not sure. They would usually read them when they actually decide what to award at the EHCP meeting. You would need to speak to the people administrating.”

“Is that not you? Who do I contact? What do I need to do to make sure you have the right information from the right people?”

“I don’t know.”

I ended the conversation no further on, with no clear way to move forward. THEY DO NOT READ THE REPORTS. THEY JUST FILE THEM. Because the reports would usually be complete, because no one reads them until they are needed, because my son lives in one place and gets medical care a few miles over a border – because of all these things, no one cares that they will fail him. No one will take responsibility.

Once I had regained my composure, I reached for the phone again. I have spent the afternoon phoning every single medical professional that deals with my son – at least, all the ones I for whom I have numbers. I spoke to their secretaries, explained the ridiculous situation and begged them to contact the Gloucestershire SEN team to pass on their information about my son.

Some were sympathetic, promising to flag my concerns to someone senior, someone who would get to the bottom of the situation, someone who would make sure that the right thing happens. Others were officious, reluctant to speak to me, reluctant to promise anything. They took down my name and contact details and they said they would “pass on the message” with dead voices. They will do the bare minimum because it is not their job or their accountability.I hold out little hope that they will go above and beyond to help my little boy.

The outcome of my son’s EHCP assessment is in a few short weeks. We have hardly any time to set this right. I cannot adequately explain how important it is that my little boy has the right support when he starts school. If he does not, the implications are far-reaching. His achievements, his education, his future happiness – they rest on this. If we make mistakes here, he may never recover from them.

I am desperate, determined, proactive. I am terrified. I have spoken to dozens of people, held back my tears, paused when my voice cracked and trembled. I am fighting, with all I have, to make sure that I do not fail him, that WE do not fail him.

But what of all the other little boys and girls? The ones who have no one to fight for them? The ones whose parents thought they could trust the system? The ones whose parents are unwilling, or unable to mount such an effort, to fight through paperwork, red tape and incompetence? What of them?

We live in a society that does not really care what happens to them. There is no sense of collective responsibility. No one feels like it is their job to fix it. The buck is passed on and passed on again and again and again…

We do not read the reports.

We do not care if your child slips through the cracks.

We do not read the reports.

10 Comments

  1. 16th June 2017 / 3:59 pm

    Oh, I am so bloody angry for you! I have said exactly the same at various points through our EHCP/School place saga – what would happen if we didn’t fight, if we just trusted that the system works and everyone knew what they were meant to be doing? And what about those whose parents do not know there is a fault with the system? I really hope you can get this sorted in time.

    • Someone's Mum
      16th June 2017 / 4:32 pm

      Thank you. I am flabbergasted that everyone is so happy to just pass on responsibility. It is so unfair to so many children. Thanks so much for commenting.

  2. 16th June 2017 / 5:20 pm

    I can’t believe you are having these problems, my son is 27 and I had exactly the same problems, we eventually got help, he went through primary school and it was bliss, however secondary school was another story, I hope it gets sorted soon.

    All the best

    • Someone's Mum
      21st June 2017 / 10:50 am

      Thank you so much. They have requested a meeting with me so I am really hopeful that things will go as they should now. xx

  3. Tansy
    17th June 2017 / 12:13 am

    I’m so sorry to hear this. I know the struggle is real and unrelenting and we all end up feeling defeated and desperate at times.
    Can you arrange for all the reports to be sent to you instead and then you pass them onto the correct team?
    Good luck, good luck… I wish you all the best!

    • Someone's Mum
      17th June 2017 / 7:23 am

      Thank you. They have them. We sent everything when we requested an EHCP. Apparently that does not count for much – they need to hear from them directly. It is utter madness. x

      • 18th June 2017 / 7:10 pm

        Hi Danielle, under SEND law, there are LA duties under section 19 (the duty to have regard to overarching principles of part 3 of the children and families act) section 28 (cooperation duties with the NHS ) and regulation 6.1 h (SEN and disability regulations 2014) that give parents the right to request that the LA request advice from “any reasonable person” during the assessment process.
        http://www.legislation.gov.uk/ukpga/2014/6/part/3/enacted

        I’m so sorry you are facing all this chaos at such an early stage of the journey. Sadly, in my experience as a send advocate it’s not uncommon and shouldn’t happen. Hope the above helps a little. Keep fighting for your little man. He has an amazing mum!

        • Someone's Mum
          21st June 2017 / 10:51 am

          Thank you so much for this information. I mentioned it during my last phone call and things seem to be taken much more seriously now.

  4. 21st June 2017 / 10:23 am

    Oh Danielle, if feel your pain, my son is 10 and the 1st EHCP was bungled by his lower school, then we were not told we could appeal until after the appeal deadline making us have to wait 6mths before we could reapply. Then his new middle school refused to accept Lewis’ diagnosis of ASD, SPD and GAD despite letters from the Comm Paediatrician, Prof. at CAMHS, Psychiatrist and GP! After 19 days of exclusions in an 8 weeks period they sent him to a pupil referral unit and forgot about him for 5mths, he’s now back there in isolation from his peers with us struggling to get another EHCP together and have him placed in an ASD Unit for Sept….It’s a constant struggle, I’m having to get the agencies to talk to each other, no one seems to be doing their job properly and my son is suffering. It’s infuriating and heartbreaking. The second my son is out of the school I’m shouting from the roof tops about their appalling handling of the situation.

    • Someone's Mum
      21st June 2017 / 10:54 am

      That sounds horrific. I am so sorry you are all going through it. It is a story I hear again and again and it makes me so sad. I really hope you find a way to move forward that is best for him. xx

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