This is something that has been a long time coming.
The Umbrella Pathway Referral.
It's something that I feel that I have had to really fight for, really stamp my feet for and very almost throw my toys out of the pram for.
Finally Leo is going to be seen and assessed by a team of people.
They will be able to look at Leo's needs and they will be able to tell us if there is an official diagnosis for why Leo struggles academically.
They will be able to look at Leo's needs and they will be able to tell us if there is an official diagnosis for why Leo struggles academically.
Before I go into this latest update, I wanted to re-cap on just how far we have come, the hurdles we have had to clear and the frustrations we have faced.
Below is the series of posts I have written about our journey over the years, I would give an account right here off the top of my head, but these posts say it all, and in a way that I don't think I could re-capture if I tried, because all of these posts were composed in the wake of events in real time, so the emotions and thoughts captured are completely raw.
What is The Umbrella Pathway Referral?
The Umbrella Pathway Referral is a Neuro-developmental assessment that helps to assess, manage and care for children and young people who present signs for developmental delays and disorders.
The pathway provides an entry point (the initial referral), an assessment process, a diagnostic process and management plans with support once a diagnosis has been provided at the end of the assessment process.
The Umbrella team is made up of:
- Paediatricians
- Clinical Psychologists
- Child Psychologists
- Educational Psychologists
- Speech and Language Therapists
- Occupational Therapists
- Integrated Specalist Support Services
How to Refer
- GPs
- Health Visitors
- School Nurses
- Community Paediatricians
- CAMHS Professionals
-Speech and Language Therapists
-Occupational Therapists
-Local Authority Specialist Teachers (ISSS Service)
-Educational Psychologists
This is where it starts to get interesting, especially if you have read the above posts, because you will have seen how many times I talked about getting a pediatrician referral. The Health Visitor at Leo's 2 and a half year assessment put it off in the first instance. She failed to follow up, I was going to book a Doctor's appointment but the Health Visitor said she would re-visit with Leo (a year later than she was supposed to) and if a referral was needed, then she would do it.
Guess what?
She REFUSED to refer him.
Since 2014 Leo has been under the care of Speech and Language (Right up to December 2016 when he was discharged), why didn't they make the referral?
It seems that despite concerns from all over the board, the health visitors original report, nursery, school, I have had to really push to get a referral.
A GP Umbrella Pathway Referral
This brings me up to Friday 16th June when I pulled Leo from school and took him to the doctor's surgery, where I had booked an appointment with our GP. I gave a very brief overview of where we were at now and handed over the latest Educational Psychologist report along with the Learning Support Report I had received very recently.
I had seen my GP about Leo's development before, at that point I was told to give him time... and I did just that. I guess part me just hoped that it wouldn't actually come to the referral and Leo would catch up before it was essential. Yet here we were back in her office, and I had told myself that this time I would not be fobbed off. This time I was going to be walking out of that door with the referral in place.
The GP said that this referral should really come from the school, she said that it was a faffy process to go through at the surgery. Of course by now I couldn't care how faffy it was for anybody, I just wanted it done.
So I posed the question 'but can you do it!?' To which she replied 'Yes, I can but it would be better coming from the school as they have more evidence and know Leo.'
In the next breath I asked her to do it, because the school had pointed me in the GP's direction, and again it felt like the book was being passed. No one wanted to be the person to refer Leo. Why it all has to be such a battle I will never know, why people want to keep seeing me banging my head against a brick wall is beyond me.
I had come prepared with up to date evidence and had more PDF's ready to go on my phone if they were needed. The doctor made a call and had a lady prepare the forms for me to sign. I went along to the waiting area and signed those forms there and then, I handed over the evidence I had brought along with me and the referral was made.
Both the GP and the lady who walked me through the application process commented on how lovely Leo was, how well behaved he is and told me that it was obviously not a behavioural issue, and that's precisely it. Leo is golden, his behaviour is impeccable and I cannot fault him, he's one of the most caring little people that I know (and that's not just because I am biased).
It was just the other month that I went along to a meeting in regards to the EHCP (Education, Health, Care Plan) process, Leo had come out in a rash on that day so I couldn't send him to school. Instead he came along with me to this meeting, where he sat patiently for 2 and a half hours (there might have been a number of biscuits and the use of my phone) while this meeting took place, and he was incredible. In fact everyone else in attendance said so.
The Umbrella Pathway Referral and the EHCP
I am hoping that this referral will go hand in hand with the EHCP application that is currently ongoing. I am hoping that the assessment within the Umbrella Referral will give us answers and enable me to cater more support to Leo and his education.
The EHCP evidence will all be submitted in the Autumn Term (some point in September 2017). Leo will be a Year 2 by this point and the developmental gap widens yet again. I need all of this to happen so that I can set Leo up to succeed in wake of the health visitor setting him up to fail.
The health visitor was supposed to be the pillar I could rely on, the pillar that Leo could rely on, but when she dropped like a domino she caused a ripple effect that has continued to fall until there was nothing left standing.
No support, no guidance.
It was just the blind leading the blind.
Going through a similar experience?
The best advice I can give anyone who is in the position I was in, or continues to be in, is look at your options. If you aren't being provided with any support or you have no idea what the next step should be, this could be a good starting point:
- Speak to nursery/early learning environment about concerns. If your child is still under the care of the Health Visitor arrange a meeting between the nursery and HV so that they can liaise with each other and come up with the best strategy moving forward.
- Don't be afraid to chase people - Keep phoning/emailing until you get the result you need.
- Speak with school SEN teacher about how they are catering to your child's needs and what they could be doing, mention an EHCP and see what they think.
- Education, Health and Care Plan (EHCP) - This involves a process of gathering information from the relevant people or agencies, including the views, interests and aspirations of the parents and child or young person. The needs assessment will help to determine whether additional provisions need to be made through an EHCP. These plans replace statements of SEN and Learning Difficulty Assessments (LDAs) for children and young people with the most complex needs, from birth up to the age 25.
If like me this has never been recommended to you, you can apply for it yourself if you have copies of the evidence to demonstrate that it is necessary. You would need to notify the school of the application as they will need to collect and provide the additional evidence.
You can find out more about your local EHCP offering by visiting your local Council Education Department for your area. If you put 'Council Education Department' into Google followed by where you live, you should be pointed to the right place, and the EHCP's usually fall under the SEN (Special Educational Need's) category.
I will be doing a post all about EHCP's in the coming weeks.
- Push a Pediatrician Referral Through - If you have concerns, or people involved in the education of your child are highlighting concerns, you can do this yourself. Book a doctor's appointment, go armed with all the evidence you can carry and insist that they make the referral.
I just wish I had stamped my feet a long time ago, I have always been afraid to nag or stand on anyone's toes, but the reality is that keeping on top of people and sometimes going over their heads is the only way to move forward.
I will be sharing a post all about EHCP's in the coming weeks, and I will put as much information as I can to try and help you with your own applications.
At the end of the day we just have to keep fighting the good fight, and provide our little people with everything they need so that they can achieve the very best of their abilities.
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