No National Transparency for ADHD referrals in the UK!

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When trying to seek a diagnosis for ADHD for a child, the stress can be horrendous and a lot of it is caused by red tape.

It has recently come to my attention that trying to get a child referred for an ADHD diagnosis differs greatly in the UK, depending on which area you live in. This little fact came up when I was talking with a foster parent who is trying to seek a diagnosis. Her child goes to school in a different local authority than the one they are living in, which makes the process incredibly complicated. If the assessment criteria for diagnosing ADHD is so accessible and fairly easy to understand (it’s laid out in the Diagnostic and Statistical Handbook of Mental Disorders,), despite there being only a few qualified professionals who can diagnose it, then surely the referral process should also be transparent, accessible, and consistent nationally.

In my own local authority (LA), I found that a referral has to be made by a professional involved in the child’s life, this can be a health care visitor, a SENCO (Special Educational Needs Co-Ordinator) or someone within a school setting, but not a doctor. I could certainly argue why this is the case as anybody with ADHD knows that is affects more than education; it is classed as a neurological disorder that affects behaviour and that covers all aspects of life. What’s concerning is when I contacted my local doctors, as part of this article, to ask them if they could refer a child for ADHD they said they could, so it would appear that even doctors are not entirely sure of their own LAs referral processes. The one good thing that could be said about the referral process in my LA was that I had no trouble finding it online and it was fairly straight forward to understand, with every step in the process carefully mapped out.

“Getting a referral in one area should be no more difficult than in another. The fact that there are so many differences leads to confusion and inconsistencies.

ADHD GIRL

Determined to find out more on this issue, I did a little digging on a neighbouring local authority to find out what their referral process is and actually found it incredibly difficult to track down online. In the end I contacted someone who works in a school in this area to find this out and discovered that it is the role of a parent to refer a child through their doctor, which is obviously in contrast to my own local authority.

You may think this isn’t an issue because after all, nobody lives within more than one local authority and should only have access to the one referral process but in my opinion this is not ok. It implies that even getting a referral, let alone a diagnosis, for ADHD boils down to nothing more than a postcode lottery where parents are given more powers in some LAs than in others to refer their children. Confused? Let me explain; in some places, it’s easier to get a doctor’s appointment than others and to see a doctor where you can air you can concerns. Likewise, in other areas it’s hard to pin down the school SENCO to have a conversation, due to their limited time and numerous responsibilities.

“SENCOs have far too many cases to keep on top of, alongside their own teaching responsbilities. This can lead to delayed referals even if they are doing their very best.”

ADHD Girl

With the rise of special educational needs today, I do think the job of trying to seek diagnosis, support and complete all the paperwork is too much for one person alone. While of course there is room for delegating, I’m assuming the funding for schools only covers for one SENCO at a time and if that SENCO’s paperwork time gets taken by covering a class due to staff absence or something else gets in the way then it makes it incredibly difficult to fulfil their responsibilities to this and also their teaching role (most SENCOs teach the majority of the time too.).

It would seem that not only is the role of a SENCO difficult due to time constraints, but perhaps in some cases, difficulties are also caused by the processes themselves. I recently spoke to a SENCO within my own local authority (who for the purposes of this blog will remain anonymous) and she explained, “The whole thing is very muddy, not just for ADHD, but for issues across the board, for example in terms of a speech and language referrals it depends on the postcode of their GP but for an EHCP (education health care plan) referral, it’s their home address postcode that it goes off.”

So who exactly is responsible for making a referral? The government seems to delegate this task to each local authority as specified in the Children and Families Act 2014 (p23); “Local authorities must carry out their functions with a view to identifying all the children and young people in their area who have or may have SEN or have or may have a disability.” Is it just me or does that seem a little vague? Carry out their functions? What exactly are these functions and who regulates that they are being carried out effectively? We know that children’s services and schools are monitored and reviewed by the government independent body Ofsted, but do these referrals processes fall under the reign of children’s services? Furthermore, Ofsted can only monitor and review how schools are catering to children with a diagnosed Special Educational Need or those that have an EHCP plan in place, not the ones who may seem to fall through the cracks in our system.

“There appears to be a gap in legislation which tells the LA what they must do in terms of identifying children with Special Educational Needs, but nothing to regulate whether their processes are successful or not.”

ADHD Girl

The SEN Code of Practice 2015 (p23) states “Anyone can bring a child or young person who they believe has or probably has SEN or a disability to the attention of a local authority.” But there is no legislation or direction for how they have to do that. It just seems to be a very grey area with no way of statistically knowing how many children are being overlooked on these issues as the LAs are under no obligation to review their processes as far as I am aware. Even if the referral processes by each local authority are regulated somehow then; 1. How do we know if everybody who needs it is able to access it? 2. There needs to be more transparency around this issue. I am not saying they don’t consult professionals or produce what they feel is the best solution for dealing with referrals, but there should never be more barriers in one area then there are in others on an issue as important as special educational needs.


I fail to see what the point is of stating legally what a local authority must provide, in terms of special educational needs, if they are not regulated to provide it? Who can afford to sue their local authority for negligence if their child is not referred due to lack of an adequate referral process or they do not get the support they need? Certainly, not someone who doesn’t have lots of money are the disposal.

With the amount of children who may have a diagnosable learning difficulty or special educational need today, shouldn’t be there one regulated method of referral that is transparent and easy to access? This would mean SENCOs responsibilities slightly easy to manage, the process easier to review and regulate to ensure it works for everyone, and ultimately it means that children (and their parents) would be able to get the support they may need a lot quicker and without all the red tape.

“23 years since I got a diagnosis and there is still too many barriers and too much red tape around actually getting refered for ADHD, that’s before a diagnosis has even been given.”

ADHD Girl

This whole issue makes me incredibly sad as it took 10 years for me to get a diagnosis after years of many different tests and more conversations with psychologists than I care to remember. It was an incredibly difficult process but was made possible by my parent’s determination to not give up on me (they changed my school, fought back against misinformation from headteachers and liaised with all sorts of professionals.). Twenty-three years later and there still seems to be just as many barriers in place. ADHD is hard enough to manage, support and live with, and that’s when you’ve even got a diagnosis. The fact that trying to seek a diagnosis, might be made all the more difficult due to lack of transparency, accessibility and inconsistency across the country is appalling.

I have written a letter to my local MP about this issue in the hopes that it can be brought to national attention. The system needs to change at a national level because a system that does not work for everybody consistently is not fit for purpose.

References

Department for Education (2015) SEN code of Practice [Online] Accessed at:- https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/398815/SEND_Code_of_Practice_January_2015.pdf (17/01/22)


HM Government (2014) Children and Families Act Legislation [Online] Accessed at:- https://www.legislation.gov.uk/ukpga/2014/6/contents/enacted (17/01/22)

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