I know it's taken me forever to update this, but I honestly haven't had the mental capacity to address it.

Charlie's annual review was in July. And it was successful, by far the most successful annual review we've ever had. Everything was staying the same provision wise, with some few changes to the actual content because it was outdated. I felt positive, more positive than any other annual review that I've ever had with Charlie, and I really thought things were on the move.

The way the provision works is that the LA pay for Charlie's speech and language therapy and tutoring, and myself a personal budget that covers the learning support worker’s wages and expenses plus more for subscriptions, activities and learning tools. The personal budget comes into my account termly, in September, January and April normally by the first Friday of that month.

In September, I hadn't heard anything. I hadn't received a response from the EHCP caseworker for over a month. I emailed on the 2nd and was told he was on annual leave, so I emailed the commissioning team (which are generally really good). The commissioning team told me that they needed my EHCP coordinator to forward on some paperwork, of which he had not done. I chased again on the 12th September to be told that there was a structural change in the SEND department and as a result all personal budget requests were being discussed and there were no panels available to decide on the outcome.

I queried when this will be resolved and I was met by a wall of silence. I knew I could not be financially responsible for the learning support worker, I simply don't have those funds available to myself. I sent a complaint through to the department…. I am still waiting for a response! Even now. I then set about trying to find the solution through an alternative route, via both my local councillor and my MP. Both of which were very supportive and really pushed to get the answers I needed. When will we be receiving the personal budget.

The main risk we had, was that the learning support worker (LSW) has known Charlie since he was born. She has a son, who went to nursery with my daughter and there is a 6 year age gap between Charlie and his sister. So the LSW had known our family 2 years prior to Charlie's birth. The LSW was a childm and Charlie went to her, from age 3 until he went to primary school in the September before he turned 5 in the November, as that is how it is done in England. So, she was in Charlie's life, not only as an early years educator but as a friend of the family. Charlie trusts her, and has built up a bond with her. Not only that, she comes with a wealth of qualifications including teaching assistant and Ofsted registered! Not to mention DBS checked, honestly it was the best option for us. This, was now a real issue… Charlie may lose this incredible support because the LA was experiencing a structural change!!

I fought and fought, rang and emailed everyone I could. Copied everyone into emails, and went as high up as the secretary of state for education (she couldn't help apparently). As I have said, my local councillor and MP were fantastic and fully supported. It was only when I was down to the last week of financial support for the LSW that finally we got a response and the personal budget was continuing and agreed. What a relief.

This was the news we were grateful for. The money was paid into the account, and then I was able to pay the LSW. However, still no news on the EHCP. So, even though we have the personal budget agreed, which is fantastic we've got nothing to work alongside in the way of targets and outcomes. So, there I was back emailing. The EHCP caseworker wanted me to review and sign off the document, however, it's not ready. And there are mistakes in it, for one Charlie is mis gendered they have put “she” instead of “he” there's a few mistakes where the word “school” is used, this is incorrect Charlie doesn't have a school so the word should be education. I will not sign this off until these mistakes have been rectified, and of course the learning targets and outcomes have been updated. Therefore, we're still waiting.

We're fast approaching 20 weeks. The guidelines of receiving the EHCP after annual review is 8 weeks. It is long overdue, and actually, by the time it is signed off it might be time for the next annual review! Something needs to change, we should not have to experience this, when Charlie has had SEN since 2017 and had an EHCP since 2018 … we're almost 7 years into this EHCP journey, I'm not sure how it is not something we breeze through every year with no complications, because Charlie's needs haven't changed, at all.

I will never stop advocating for Charlie and it's likely that I have to many years ahead of me yet to continue this journey, which feels both frustrating and overwhelming at times.

Georgina x