Written evidence from Ian Sutton (SEN 64)

Education Committee

Solving the SEND Crisis

Proposal for Integrated SEND Trusts

Ian Sutton, Children & Young People Project Lead, LDA Programme, South East London ICB

I want to offer a proposal for future delivery of SEND support.

I currently work for an NHS Integrated Care Board (ICB). In truth, I still don’t really know what an ‘ICB’ is: who we are meant to be integrated with; at what level; to what ends and how ‘integration’ is defined in this context. I assume it’s about collaboration, joint planning and joint funding at ‘place’ level with other delivery partners. I can see that type of integration can apply when it comes to commissioning ‘health’ activity such as primary care, maternity services or cancer, for example where we have the same ‘parent’ organisation and a shared vision of what good outcomes look like (health people!). In many way, that’s easy where the issue is wholly or majority ‘owned’ by a coherent NHS ‘family’. But, ‘health’ like safeguarding (or SEND, for that matter) is everyone’s concern so, an ‘Integrated Care Board’ should therefore include a wide range or organisations and institutions including all aspects of a local authority and local schools, for example.

That would be great because that level of integration at place is what is required if we are to make a positive change in the SEND landscape.

My role involves designing services and supports for children and young people with SEND (specifically neurodivergence and learning disabilities). As such, when ICB’s were introduced I was both excited and perplexed by the introduction of ‘integrated’ Care Boards. It was exciting because SEND traverses ‘health’, ‘education’ and ‘social care’. Integrating them into a seamless whole would be so helpful. But, I was perplexed because I couldn’t see how these antique, boundaried, megalithic institutions of ‘health’, ‘social care’ and ‘education’ could possibly integrate given the multitude and complexities of funding, professional status, inspection regimes, policies & processes and cultures that serve to differentiate them.

I think I may have been a bit too ambitious in my interpretation of remit of an ICB! But, what I was imagining was in fact exactly what the SEND landscape needs to be. The planning, funding and co-ordination of SEND activity can only really work if it is fully integrated.

When it comes to current SEND provision, nothing is genuinely integrated. Here's what happens. A child is diagnosed by the NHS. The NHS then tells the education provider that the child has identified needs (it may stipulate those needs). The education provider then asks the local authority to pay for support for what the NHS say the child needs (which the school probably disputes anyway, because they are the teaching experts). The local authority will (lets be honest) find ways not to pay the school because of its own financial pressures. This is evidently a recipe for conflict and antagonism – evidenced by the growing number of tribunals and complaints. There are so many mis-steps in this process: the local authority has to pay for/co-ordinate something an increasingly autonomous school wants which, itself, is something requested at the behest of a clinician in order that the child be educated ‘properly’. This is an unnecessary and combative chain where there is more room for disagreement and conflict than there is for support and unity. 

And, of course, there are parents and children in the middle of all this having to have complex, dependent relationships with all three while players who, it seems, cannot communicate or co-ordinate or even understand each other.

In reality, SEND is a multilateral issue addressed by a disparate collection of unilateral provision. As such, SEND is an issue that is layered over a pre-existing structure that was designed to primarily address single issues. But SEND crosses all institutional boundaries.

The cross-over is not only institutional. There is a cultural imbalance whereby ‘disability’ is seen as the domain of ‘health’ whereas most of the ‘disabling’ aspects are societal (such as inaccessible buildings or negative stereo-typing). Many of the barriers to an ordinary life for young people with SEND are educational or social, rather than medical. There is very little in the specific experience of being neurodivergent, for example, that is about your ‘health’. Autistic people, for example, do not generally need health input any more than the population as a whole (broadly speaking). Yes, there are therapists such as SLTs and OTs who can support your development and yes, autistic people can be more susceptible to stress and anxiety. But, there is no specific ‘autism’ treatment plan that requires an NHS response in the way that say, Diabetes or cancer might. Even with conditions such as Cerebral Palsy, where medication or aids may be necessary, it will inevitably be your housing or school or transport or social life that dominate your collection of problems. In fact, where our neurodivergent community is concerned, once the diagnostic assessment is complete, you are unlikely to encounter the NHS again (outside of normal colds, flu’s and accidents) until things go very wrong. And they do go very wrong – most often at key transitions such as post-16 when all your familiar supports and scaffolds fall away when you leave school. 

At that point (when crippling anxiety and overwhelm take hold), you will fall back into that old, familiar combative triumvirate. Health will tell the local authority this young person needs a social worker; the social worker will tell the college it needs to be flexible in relation to attendance, for example and the college will say it needs mental health support. And so it goes. More antagonism and bruised professional identities.

All of the above is a simplistic pen-portrait of a system that may claim to be ‘joined up’ – i.e. several components working together – but is not actually integrated.

So, what would true integration look like? What if the clinicians, the social care practitioners and the educators were actually integrated? What if they worked for the same organisation, played for the same team, as it were?

When it came to resources in place (money or advice), wouldn’t it be so much better if it came from one combined, single organisation. So, for example, when a concern arises, the child accesses a single building where a need is identified, then then someone in that building draws up a support plan and then that organisation’s single, dedicated budget is used to implement that support plan? No, referrals; no funding applications; no using Section whatever of this or that Act; no High Needs Block; no bureaucracy (well, maybe not ‘no’ bureaucracy but, certainly a whole lot less). The parent would only ever have to contact one service. The child’s school would also only have to deal with one service. The child’s records and plans (and outcomes) would be recorded and monitored by one service.

In an ideal world in which SEND provision was to be properly addressed I would create a new organisation in each local area – not a small organisation but a sizeable structure that I will call an Integrated SEND Trust (or IST).

There would be a single front-door accessible from a GP, school, early years provider or walk-in from the street. The first step would be identifying needs. IST’s would not diagnose. If it were medically required, that would be done by a primary or secondary health service but, crucially, SEND is (correctly) not a diagnosis dependent system. Instead of ‘diagnosis’ IST practitioners would assess and profile the specific and personalised needs of any child referred to them by anyone. If need was determined or identified, the IST would draw up a support plan and provide implementation staff or teams to assist people (like parents, schools or employers even) to embed those plans and, they would fund all of it - centrally. This would be through direct support such as therapy, provision of learning assistants, use of adaptive technology or the provision of strategies; advice and guidance.

Each child would have a named key worker – a single point of contact during their time being supported (which may not be continuous but could come and go dependent on need). You would be reviewed annually as a matter of course. If you felt your needs had been met or could be managed, you could dip out of the service. If needs arose, you could jump back in, be re-assessed and start again with a new or revised plan.

All transitions points would be monitored and managed as a statutory part of the service – even if you no longer received support, the IST would check-in at key points such as Year 6 or Year 10. As such, there would be no need for local authority PfA or Transition Teams to navigate the journey from children’s services to adult services because support would simply continue as an inherent part of the new service. It would truly be 0-25 as there would be no internal mechanisms that were structured around ‘children’s’ and ‘adult’ services. You would be supported in relation to your need only – not your age or status. Crucially, this would mean there would be no damaging cut-off as there currently is in relation to services such as CAMHS.

That distinction between children’s services and adult services is a Victorian hangover that serves no purpose other than legal definitions and is an absolute minefield. It is the bloodiest battleground in the world of SEND. It has to change.

ISTs would have a 0-25 mental health component. Consequently, many services such as CAMHS would be free to re-structure so as to focus on priorities other than SEND support. This does away with waiting lists or cumbersome handovers at 18 years of age. Demand for services such as CAMHS or mental health in-patient services would decrease anyway because issues would have been observed, tracked and addressed over time, rather than sitting unnoticed then exploding as crisis having been left unaddressed.

ISTs would need but not necessarily new money – this is taking budgets and money currently allocated to the NHS and local authorities via mechanisms such as the High Needs Block from ICB’s and local authorities and giving it wholesale to these new, ISTs. They are the accountable body. That probably means funding direct from the Treasury – not the DfE or DoH because that means keeping the old structures, inspections, accountabilities and reporting lines open and that only serves to sustain the broken system.

Therein lies a key problem. It goes all the way to the top by virtue of that fact that even at Government level there are these organizational and cultural encampments. These in turn filter down and create key barriers that, like professional identity, are often cultural and intangible.

I work for the NHS and have done for 4 years or so. But, before that I worked in local authorities for nearly 30 years. Here’s something about me that I will share as it is pertinent. When I travel home at night on public transport, I love to wear my NHS lanyard. It makes me feel special. I never felt that way about my local council lanyard! Conversely, when ICB’s were introduced, I could feel the resentment in my local authority colleagues about why the NHS had been deemed the place where integration should be lead from. Up to that point, many senior local authority leaders had absolutely no idea who the Senior Responsible Officer for SEND was, let alone what they did. Yet, here they were asking for plans and meetings. It is incredibly difficult to create an integrated team when one set of practitioners carry the near religious status of the NHS and another is subject to constant tribunals and complaints.

This is also true at practitioner level. I ask you: when you review the evidence that comes before this enquiry, can you guarantee that there will be no unconscious bias when it comes to professional identity? Who might you listen to most earnestly: a Pediatrician you refer to by name as “Doctor” or a SEN Case Officer who earns £25k p.a? But before you defer to status, titles and education, remember that that Case Officer lives this every day – not just now and then as a locum – and that most SEND issues do not involve a knowledge of tissue, bone or organ optimization. That SEN Case Officer is actually probably better placed (in my experience) to have a better grasp of a child’s outstanding social and emotional needs and the barriers they may pose to an ordinary life. Yet, usually, the person who is addressed as ‘Doctor’ is often the one who is heard loudest and most authoritatively.

So, we have to tackle status and identity. We have to develop partnerships where there are new, equitable and clear roles. Not all of us are surgeons but all of us can support a child with SEND regardless of our status in society. It is important to develop a culture where we talk in terms of our skill-set rather than our job title: “I will support this child to use non-verbal communication,” “I will support this child to get the adaptations they need to their home”.

Professional identity has created another barrier to integration, which is pay. An IST, will need a new pay framework that everyone steps into and, by extension, steps out of their current structure. The fact that NHS staff are banded and council staff have spinal points and schools have teaching & responsibility points make it difficult to be equitable. In my experience, it creates a very real and palpable tension in MDT meetings where people are saying the same thing but paid at very different rates.

Tackling these huge issues feel undo-able. But if it proves too difficult to create a whole new organisation with new roles and a single pay structure, we should not dismiss the underlying concept of a single, fully integrated SEND agency.

I make this analogy all the time. I am not a huge football fan but I can see that the way football is structured provides us with a clue to a way forward, or even a transitional stage. Premier League football clubs are arch rivals. They also have exactly the same structures that define their weekly battles. They have defenders who try to block the other team’s forwards and vice versa. But, every few months, a centralized body – the National Team (England, Scotland, etc) – takes a selection of players from all across the League, provides them with extra straining, keeps them functioning in their roles (defender, forward, etc) but gets them to put aside all their deeply rooted cultural rivalry and differences and to play as a single team at a higher level for the greater benefit of all.

So, if we can’t create permanent IST’s to sit alongside local authorities and ICBs then perhaps we can take staff from these organisations to regularly perform as the SEND equivalent of the England squad or the Lionesses – a virtual IST that could meet once a week; for one week per month; whatever with a single identity and support structure.

Having what are known as ‘special educational need and/or disabilities’ is not a health issue though you may need the input of a clinician; it is not purely an education issue though you will need to go to a school that is able to accommodate you; it is not a social care issue (unless you or those around you are at risk or deemed to have behaviours that challenge) and yet your ‘social’ life is of vital significance. SEND is not one of those things, it is of course, all of those things at once. But the basic problem is that each of those elements has always been carved up and considered separately. Leaders and policy makers will argue that these elements are integrated, coordinated or jointly planned and delivered but, in truth, that is only because they are bound together by a Heath Robinson concoction of legislation, referral forms, meetings and bureaucratic mechanics. Yet, that join-up is invisible to parents who have a list of contacts as long as your arm each with a different phone number, email address and employer. We are tied to a multitude of institutions, pay grades, professional cultures and inspection regimes, all of which mean utterly nothing to families. What they experience instead of support are in fact the bomb shelters of a system at war with itself. We have had to invent the concept of a tribunal because of all this dislocation. How mad is that!?

We have to integrate properly. Bring everyone into a single structure under one roof; with one budget, one pathway; one set of procedures; one mission. Why not? The only answer to that is because we are too conservative (small ‘c’) in our approach: “this is the way we’ve always done it.”

The ‘system’ as it stands today makes absolutely no sense unless viewed through this lens of history and tradition. The evolution of SEND support is charcterised by an accretion of new laws, new services to fill an emerging gap and constant tinkering around the edges. Her we are in 2025, still trying to make Victorian institutions fit contemporary problems – its like fighting a cyber war with flintlock rifles. When it comes to SEND, history and tradition are now the problem this enquiry is trying to address.

Do not look for the solution from within the system. It’s time to re-design the system altogether.

The IST’s I propose are radical. They will be big organisations (think a community health trust) with all the management and overheads and strategy that comes with that. But, I would argue as an experienced professional (and the parent of two ND children in their 20’s), that they need to be big because the size of the problem for society is big. And bear in mind, there will be a proportional shrinkage of local authority and health trust size and workload so, it will balance out. I’m sure a lot of Directors of Children’s Services and their Cabinet members would welcome that.

Take the elements that define SEND support out of the multiple, over-burdened, single-issue organisations that currently make up this malignant machine and bring it all together under one umbrella. That’s it. That’s the way forward.

January 2025