The SEND system - 101

I strongly believe that the UK SEND system is broken beyond repair, and I’m not alone. As it continues to gain interest, you might start to hear more about it in the media, but what exactly is the SEND system? Here’s my take on it.

The SEND system was put in place as part of the Education Act of 1902 to ensure all children with special educational needs and disabilities (SEND) can access the full-time education they are entitled to. Just like their peers. 

There are four main players in the system: 

1: Child development clinics: these are multidisciplinary centres for children with complex developmental difficulties in their early years. The professionals involved include community paediatricians, physiotherapists, occupational therapists, speech and language therapists, specialist visitors and key coordinators. Children get referred to this service by healthcare professionals (like their GP, school nurse or health visitor) if they have difficulties in two or more areas of their development to the extent that they significantly impact their daily activities.

If the referral is successful, a programme of care will be decided on an individual basis but is likely to include therapeutic interventions in a variety of settings and with a range of prescribed activities. From talking to my peers, I believe the waiting time for CDCs is around a year.

2: CAMHS (child and adolescent mental health services): my children were both school-aged when their challenges became obvious, and were referred to CAMHS rather than the CDC. CAMHS provide psychological and psychiatric support to children and young people. They provide clinical assessments (e.g. for some, but not all, neurodivergent conditions such as ASD and ADHD, and mental health disorders) as well as medication for appropriate conditions. But they are super hard to access. First, you have to convince a healthcare professional to refer you (for us it was our GP, and it wasn’t easy). After convincing her to refer us, CAMHS then sent screeners to me and the school, and only if you flag markers for one or more conditions will they accept you onto their waiting list (and the screeners aren’t always accurate). That’s then followed by impossibly long waiting lists… which they sometimes use private companies to help work through… but then you have to wait again to actually see the psychiatrist when necessary.

If you can afford to go private, that’s an option, but you can’t guarantee you’ll be able to access the medication you need through your GP either at all or on an ongoing basis. And some (but not all) schools don’t accept private diagnoses as some practices are less reliable than others.

Besides the screening tests, CAMHS does not routinely link with any of the other parts of the system, but they do provide assessments, diagnoses and reports with suggestions on reasonable adjustments to put in place. In our case, CAMHS and our GP have something called a shared care agreement, which means that once CAMHS have prescribed medications, the GP can take over prescribing it - but it’s not been that simple for us, in fact, it’s a constant battle, and the two services communicate via us (the parents) rather than talking to each other to seek resolutions.

3: Schools (educational settings): the support you get from schools is highly dependent on the motivation, empathy, and willingness to innovate of the Sendco (Special Educational Needs and Disabilities Coordination Officer). My sister (who is totally epic in every way), is an incredible Sendco at a busy inner London secondary academy school. She’s the shining example of the art of the possible in terms of SEND provisions. What I’ve experienced, though, has been the complete opposite. I’ve got to the point where I think that their reluctance to support SEND requests may be a deliberate ploy to stop other SEND children from applying to join because SEND children need more resources than non-SEND children (in other words, they cost more! All children are allocated £6,000 towards the provision of their education, this goes a lot further when the child doesn’t have SEND).

And that’s when our child/children’s additional needs have already been picked up on. Before then, as parents, we often expect schools to detect any developmental challenges our children might have since they’re the experts and spend the most time with them in a learning environment. We hope that their teachers will bring any developmental concerns to our attention and arrange for assessments and adjustments where appropriate (e.g. for dyslexia). But this is happening less frequently as budgets continue to be squeezed, schools have less dedicated staff, and parents are having to become SEND experts in order to identify potential differences. If they notice something, it’s unlikely the school will cover the cost of an assessment, so they then need to pay for one to be carried out privately if they need help finding answers… and even then, some schools may not even accept those findings as they’re not from the NHS.

4: Local authority (your local council): I remain open-minded and hopeful about this service. I’m in the process of applying for an EHC (education and health care) needs assessment for my daughter, which if successful will allocate an educational psychologist to work with the other services (including school and CAMHS) to assess her needs and if identified, may recommend an EHC plan and supply a “top-up funding” (in addition to the £6,000 budget all children get). I’ve always thought this was the last report and would be impossible to achieve, but as you’ve probably realised, I’m well beyond my ‘last resort’. This process is meant to take 20 weeks, but I’ve been warned that the statutory timeline is better met by some local authorities than others, I’ll keep you posted!

The real heroes

There are then several charities and not-for-profits (like Sendiass, IPSEA and Parent and Carer’s Forums) that offer legal advice and moral support to help parents master the system, to figure out who to go to for what, what you should expect from each of the players and what you are entitled to, so you can fight for it (because it is often a fight). I’d like to give a special mention to these services because they are my heroes, and without them, I don’t know where we’d be right now!