本文选自《卫报》(The Guardian)长篇深度阅读栏目(The Long Read)。

A wall built to keep people out‘A wall built to keep people out’: the cruel, bureaucratic maze of children’s services

In a system cut to the bone, gaining access to the support we had been promised for our daughter’s special educational needs was an exhausting, soul-sapping battle.

One morning back in May 2016, my wife and I had a visit from a nurse, who had come to the house to discuss our daughter, Alice. We made coffee, put biscuits on a plate and sat around the kitchen table.

“So,” said the woman, who was part of the local community learning disabilities team, “how can I help you?”

My wife and I exchanged weary glances. We had lost count of the health professionals who had asked this very question. But perhaps it was going to be different this time. Our visitor was young and bright-eyed. Would she be the one to finally give us the support we needed? We started telling our story all over again.

It began in 2003, when we adopted Alice, then four months old. For those first few years, you would have described her as determined, boisterous and noisy. In July 2006, we moved from Cambridge to the West Country, and everything changed. Alice would wake in the middle of the night and scream for hours on end. A new problem emerged when she started at the village primary school. She would wake up every morning in a state of high anxiety. If we asked her to put on any item of clothing that she found too tight, too itchy or the wrong design, she refused to get dressed. At one time, she would only ever wear knickers with a panda design on – when BHS stopped stocking them, I had to buy an indelible marker and draw the designs on myself. Many children do this at some stage, but Alice’s difficulties with clothing were prolonged and extreme by any measure.

Some days, we would make it out of the door to walk to school, only for Alice to turn around and run home, go back in the house and lock us out. Only a visit from the headteacher, who would dash around the corner from school, would persuade her to come out. After school, Alice was agitated, hyperactive and difficult to control. She refused to go anywhere in the car. When we finally got her into the car, she could become angry and violent. Or she would simply remove her seatbelt.

Alice could not settle at night, which meant one of us had to stay with her until she fell asleep. It often took hours. Hours of reading the same Horrid Henry stories or watching a film we had already seen dozens of times, which she found comforting. Such bedtime rituals are not uncommon with children, but this was the norm every night, throughout her primary school years, and beyond.

We sought help from the GP, who referred Alice to a paediatrician. Following an assessment in October 2010, when she was seven, we were told she had attention deficit hyperactivity disorder (ADHD), foetal alcohol syndrome, auditory processing difficulties and pervasive developmental disorder (a diagnosis that acknowledged Alice had some autistic traits, but not enough to be described as autism spectrum disorder). We experienced a mix of shock and relief. Perhaps now we would get some help. But again and again, we came up against the same problem. If we managed to reach the head of a long waiting list and had Alice assessed for support, we discovered that there was none on offer.

My wife is an occupational therapist who works with adults with disabilities. She understands much of the terminology used by services, and is a dab hand at filling in the long-winded forms. I am a psychotherapist, so I recognise some, if not all, of the phraseology used. I am also freelance and can therefore be more flexible than many parents who work full time, when it comes to attending appointments. But even with this head start, we were really struggling to get any support. For Alice’s sake, and for ours, we desperately needed someone who could help her to communicate her frustrations and help us develop effective strategies.

The coffee and biscuits had all gone by the time we finished our story. The nurse from the community disability team had written copious notes. She looked up from her pad and smiled. “This must have been so difficult for you.” My wife welled up. We were both exhausted by Alice’s obstructive behaviour, by sleep deprivation and worry. When she wasn’t agitated or angry, Alice was a loving, funny girl who had friends. But she was now so often stressed that her anxiety was close to consuming her – and the rest of us.

I will never forget the nurse’s parting words. “I won’t let you down. I promise to get you the support you need.”

Two weeks later, a letter arrived. The nurse said she had spoken to her manager, and she regretted that Alice did not fit their criteria. Alice had specific learning difficulties, not learning disabilities, and therefore they were closing her file.

Given that we had been referred to her department, this was not only disappointing, but also confusing. We were learning about these opaque definitions as we went along, but the nurse was supposedly an expert. So why had they assessed us if they knew we were never going to qualify for help?

Yet another service had dangled the promise of support, only to whip it away. By now, beaten down by the system, we had come to the conclusion that children’s services, within both education and health, were impenetrable to families like us. The dense forms and long waiting lists amounted to a cruel bureaucratic wall built to keep people out. When we were assessed, we would almost always be discharged straight after. Which made us think: if a system exists to assess but never to provide intervention, then surely it is not a functioning system. It is merely the appearance of one.

We constantly asked ourselves why. The only conclusion we could draw was that it was a funding issue. Providing therapy requires expertise and time. If we – and others like us – could be prevented from accessing support, then we would not become a cost burden.

Alice has special educational needs. The Department of Education states that, as of January 2018, there are 1,276,215 children in the UK who can be described this way. That number has risen since 2017, although this doesn’t in any way provide a full picture. It is harder than ever before to get your child assessed for special educational needs, so the true figure is likely to be higher. Even with a diagnosis, because council budgets have been brutally slashed, it is hard to get support.

According to Renata Blower, a director of the Special Needs Jungle, an information resource that helps families navigate services for children like Alice, there has never been a greater demand for support and knowledge. “Our website now receives around 200,000 hits a month – more than ever before,” Blower said.

Families who struggle every day with children who are anxious, hyperactive, obstructive and at times deeply unhappy, come up against a wall again and again. The system that should be helping them appears to be channelling all its energies into preventing families from accessing support.

Under the stairs in our house there are two bulging box files, containing the paperwork relating to Alice. Looking through the documents, the same pattern – of services batting us away – is painfully evident.

The one exception was in August 2011, when Alice was nine. That was the year we secured her statement of special educational needs. A statement – or education, health and care plan as it is now known – is a legally binding document that sets out what extra provision a child with special educational needs has a right to.

For the parent of a child like Alice, for whom school is a source of huge anxiety, a statement is a passport that should guarantee support throughout the school years. Today, they are incredibly hard to obtain. We set out to get a statement for Alice when it was clear she was struggling at school, not simply because of her ADHD and auditory processing difficulties, but because of suspected dyslexia. Through the headteacher, we requested a statutory assessment (a full investigation carried out by a local authority educational psychologist) of Alice’s educational needs. The process is free and, if I remember correctly, took about a year. Following the assessment, the local authority confirmed that her problems did merit extra support – and a statement detailing what she was entitled to, both within the classroom and through other services, was issued.

The document said she needed four days a week of close support at school. It quickly became clear this wasn’t going to happen. Alice’s overstretched teaching assistant was often asked to look after another child with learning difficulties, in addition to covering the school’s front desk. I should add that although we live in the countryside, our village is not cut off. We are just 30 minutes from a city, and close to good road and rail links. What I am trying to say is, the school could without doubt have found individuals to do the work, but they didn’t have the money to pay them. Alice had a statement setting out measures the local authority was legally bound to provide, but austerity was making a mockery of it.

The speech and language service in our area is run by Virgin Care, now one of the UK’s largest private providers of healthcare. Virgin Care has accumulated almost £2bn of NHS contracts over the past five years, although precise details of what children’s services they run are hard to find because neither the Department of Health and Social Care nor NHS England keep centralised records.

Following an assessment in November 2013, we received a letter from Virgin Care. We found it baffling. It read: “As Alice’s language skills are delayed but in line with each other, her needs can be best met within the school environment and her case is now closed.”

My wife attempted to translate for me: Alice was significantly behind in her cognitive development. Not only did this diagnosis feel incorrect, but also, for reasons that were never fully explained, it absolved Virgin Care of any duty of care and handed the responsibility over to Alice’s school. This seemed utterly ridiculous, not least because the letter then detailed all the specialist strategies that Alice’s teaching assistant was obliged to deliver.

By December 2013, when Alice (then 11), was in year 6, we could no longer ignore the problems. Her reading levels were four years behind her peers. We had asked repeatedly that the teaching assistant be allowed to do her job, rather than be constantly pulled away to work elsewhere. Again and again, Alice, very distressed, told us that she got no support in lessons and felt completely lost. Eventually we cracked and had her transferred to a larger, better-resourced school. Disruptive though this change was, for the final year of her primary education, Alice at last received the dedicated support her statement demanded, and her test scores improved dramatically.

It was a rare moment of triumph. Our social worker from the post-adoption team would visit once a year. She was always sympathetic, but made it very clear how strapped for cash her department was – and indeed how worn down by the system she was.

The post-adoption team did find us places on a parenting course early in 2014, aimed at helping frazzled couples like us acquire the skills we needed to manage our children’s challenging behaviour. Delivered by a wise, empathetic psychologist, it was insightful, sometimes revelatory stuff. But given that our lives had already been consumed by a quest for support, the 12-week course, delivered every Monday in a town an hour from home, often felt like another sap on our depleted energy and time. We needed specialist support, not to become the specialists. It was also harrowing. Hearing the stories of other adopters, many attempting to cope with situations just like ours, was traumatic.

By the time Alice started at secondary school in September 2014, she had received just four hours of therapeutic support in total (in the form of strategies to calm her down). She was more anxious than ever. In addition to obstructive behaviour and sleep difficulties, she had also developed a head tic – jerking of the neck, caused by stress. In 2015, we approached our GP again, asking for a referral to the child and adolescent mental health service (Camhs) for help with her anxiety. Camhs, which offers counselling and other psychological support across the UK, is run in our area by Virgin Care.

After sitting on a waiting list for more than six months, we were offered an assessment in February 2016. We were seen by a kindly psychotherapist, who listened carefully to our concerns, taking time to hear Alice’s perspective, even as she squirmed under the spotlight. We dared hope that, finally, some meaningful help might be provided. A week or so later, a letter informed us that Alice was to be offered therapeutic support.

On our return visit to Camhs for a follow-up appointment a few weeks later, we were astounded to hear that there had been a change of decision. Alice was now ineligible for support. Without a diagnosis of autism or psychosis, she would not be offered help. So Alice’s symptoms were considered serious enough for her to be placed on a waiting list, but not serious enough to be treated. Instead, she was referred on to the community learning disabilities team for assessment. This was how we ended up sitting at the kitchen table with the nurse in May 2016.

Once again, support had come tantalisingly close, only to be withdrawn. Our local Camhs boasts a team of child psychiatrists, clinical psychologists, cognitive behavioural therapists, child psychotherapists, occupational therapists and many more skilled professionals besides. Yet its real expertise appeared to lie in finding ways they couldn’t help, rather than ways they could.

In 2016, we embarked on our most gruelling fight yet, over schooling. Alice, now 13, was in year 8 of mainstream state secondary education. She was in classes of up to 30 children, where she barely understood anything beyond the teacher’s opening sentences. Despite her very clear statement of special educational needs, she received no one-to-one support with her reading and, within lessons, only sporadic one-to-one support from helpers with no specialist dyslexia or speech and language training. She was also being bullied.

At the end of a day in this terrifying place, Alice got home hyperactive, angry and frustrated. In addition to the head tics, she now suffered from severe stomach pains and dizziness. Her disquiet would peak before bed. Aged 13, she still needed one of us to lie with her, soothing and calming her, before she eventually dropped off (also aided by melatonin).

We had chosen Alice’s secondary school, which was not close to home, because it had a respected special educational needs department. But things were getting worse. We urgently needed to find somewhere that was far more focused on her specific needs – a school that would actually deliver the provision in her statement.

At Alice’s annual review in May 2016, we asked that she be transferred to Mark College, a specialist dyslexia school. Our local authority resisted – placing Alice in independent education would cost them more, after all – so we requested the opportunity to appeal at a special educational needs and disability (Send) tribunal. This tribunal, where the decision lies in the hands of an independent judge, has the power to order local authorities to change its decisions.

Preparing for a tribunal means employing a specialist education lawyer, as well as commissioning reports from a speech and language therapist, an occupational therapist and an educational psychologist, some or all of whom are expected to attend court. It all comes at a huge cost – over £18,000 in our case.

It was more than just a financial drain. Our energy and morale were at rock bottom. We were facing a court case simply to secure our daughter the support that should have been hers five years before, when her needs were first diagnosed and the statement was issued.

Our lawyer assured us that, while there were no guarantees, Alice’s case was strong. However, what should have been a straightforward process was anything but. Our educational psychologist issued his report (one that would be used as evidence in the tribunal) on 11 June 2016. Shortly after, we received notification from the local authority that our tribunal date would be 17 January 2017. An educational psychology report is valid for six months. The tribunal date meant we had to get our report renewed – at the cost of £1,500. What is more, the speech and language therapist and occupational therapist we had commissioned said that when they attempted to assess Alice in school, they felt they were obstructed. They spoke of difficulties making appointments, and had got the impression that their visits were seen as an unnecessary and irritating interference. We began to wonder whether something else was going on.

Our lawyer was convinced these were deliberate tactics on behalf of the local authority – tactics that he had encountered with other clients throughout the UK – all designed to obstruct or delay the process and wear parents down to the point where they throw in the towel. We have no way of proving his theory. It would be nice to think that such dark scheming does not go on. But given what we had experienced over the years, it doesn’t seem beyond the realms of possibility.

On the day of our tribunal in January 2017, it quickly became clear the judge was leaning in our favour. His sighs and raised eyebrows suggested that he was aghast at the county’s flaky experts, flimsy evidence and unsubstantiated promises of support. Two weeks later, we got our decision: Alice was heading to a specialist school. The £18,000 legal costs had been worth it – she was finally going to get the help she so desperately needed.

In February 2017, Alice began at Mark College. The school is run by the Priory Group, better known as the provider of alcohol and drug rehabilitation programmes. Priory is owned by Acadia, a US healthcare provider, which paid £1.28bn for the group in 2016.

The week after Alice started, Mark College received an Ofsted report that rated the school as inadequate. We were utterly horrified, and met with the head. The rating did not tell the whole story, he said. With a specialist school, there were many more processes and procedures to be inspected. It was all too easy to trip up on a single missing certificate or piece of paperwork – nothing they couldn’t remedy by the next inspection.

We were reassured. Before long, we saw huge changes in Alice. She was weekly boarding – a massive step for her – but had settled in well. In contrast to her days being bullied at the state secondary, she was popular. She forged a deep bond with her tutor, who was committed to improving her self-esteem and communication skills. This, combined with the homely environment, small classes and guarantee of therapy in line with Alice’s statement, seemed like a dream come true.

It turned out, unfortunately, that it was a dream. In December 2017, the school received a second inadequate Ofsted rating. We took a long, hard look at the paperwork this time. The report drew particular attention to the safety and welfare of boarders.

A new head was appointed, but by now, other issues were worrying us. As of 5 March 2018, more than a year since she had started at Mark College, Alice had only received two sessions of occupational therapy, despite the fact that her statement specified a session every week. Alice told us of one class, with just two pupils, in which the teacher had effectively given up on her, letting her play on her phone while he devoted his energies to the other child in the room.

A spokesperson for the college acknowledged that the school had a number of issues when Alice attended: “We found it difficult to recruit occupational therapists for Mark College, which meant that for a period the number of therapy sessions available was more limited than usual. We should have kept [parents] better informed of this and apologise for not doing so. We have also strengthened policies around the use of mobile phones within the school environment.”

We met with the new head, who promised to look at our concerns. For a few weeks, Alice did receive occupational therapy, although this progress was soon to be dramatically derailed. In June 2018, the head rang to tell us that the residential provision would be closing at the end of term, just four weeks away. He explained that, despite their best efforts, the boarding standards demanded by Ofsted had not been met and, as another inspection was imminent, there was a very real danger of another inadequate rating, and the school closing. In other words, they had decided to sacrifice the residential provision to save the school.

A spokesperson for Mark College said: “The decision to move to day placements only was a difficult one, but made in the best interests of the pupils and the longer term sustainability of the school … A strong, new leadership team is now in place and rapid improvements have been made.”

Alice was halfway through her GCSE courses when we received the news. She was devastated. We had finally found a school where she felt at home. And she was terrified of the changes to come. The distance – it was two hours’ drive away – meant staying as a day pupil was not an option. As most specialist schools were closing for the summer holidays, we began a frantic search for a new school. We seemed to spend whole days going up and down the M5 just as a heatwave took hold, stress levels so high it was impossible to calmly assess what was on offer.

We finally found a new specialist school. Alice spent the summer hugely apprehensive about starting. She is, at the time of writing, beginning to settle, but it is still early days.

In the midst of all this, we had some very significant news. Back in Alice’s primary school days, our paediatrician referred her to the local autism assessment team. We had long known she had autistic traits – including anxiety around transition or changes in routine – but had attempted to understand those behaviours within the context of her vague diagnosis of pervasive developmental disorder. Our referral repeatedly got lost in the system and, over the years, we pushed again and again for an assessment. Finally, in May 2016, eight years after our first request, our local autism service (run, you guessed it, by Virgin Care) confirmed that we were on the waiting list.

It took another 18 months before she was formally assessed. We then waited until December 2017 before we finally received confirmation that Alice had been diagnosed with autism spectrum disorder (ASD). It explained so much. How helpful would it have been to know this 10 years ago, when we first requested an assessment. We would have understood the causes of Alice’s stress and might – just might – have been able to secure support from our local mental health service.

With the school issue settled and Alice’s autism spectrum disorder diagnosis finally confirmed, we feel we can take a breath. And as we do, we can’t help reflecting on the system’s many flaws. Many of the teams involved in Alice’s case – speech and language, occupational therapy, post-adoption – work in the same building in our local city, all part of what is optimistically known as integrated children’s services. In our county, this is run by Virgin Care. On its website, the integrated children’s service says it aims “to provide a joined-up service to make sure you have all information and care you need”. But in our experience, none of the teams seemed to ever share information or talk to each other, let alone provide care in a coordinated manner.

Confusing forms, soul-sapping waiting lists and a continual redrawing of the lines: these add up to obstruction, to the feeling that agencies do not want to help. On the few occasions when we succeeded in winning support from the state, it has been down to our collective expertise and persistence. So what hope is there for couples without our resources, or for a single parent coping on their own?

The one obvious benefit of preventing people from accessing services is that it saves the government the expense of paying for support and therapy. In 2014, the government conducted a major overhaul of the way special educational needs are supported. Part of the Children and Families Act, the changes were designed to put children and their parents at the centre of discussions about the support on offer. But as a spokesperson at the National Autistic Society says: “Carrying out wholesale reforms at a time when council budgets have been slashed was never going to work well.”

The autistic society’s report, Autism and Education in England 2017, talks of long waits for support to be provided in school, refusal by local authorities to carry out assessments, and failure of local services to work together to meet children’s needs. It describes a system starved of investment and broken as a result.

If care-providers continue to fail to diagnose and support children with autism and other learning difficulties, those children are liable to develop multiple problems, anxiety in particular. Marianna Murin, a principal clinical psychologist who managed psychology provision at the National Centre for Autism Spectrum Disorders at Great Ormond Street hospital for more than a decade, talks of alarming rates of mental health problems in this group.

“It’s estimated that 50% of children with ASD have at least one anxiety disorder, compared with 2.4% of the general population,” Murin said. “Hardly surprising given the greater risk of academic underachievement, isolation, peer victimisation and bullying. In fact, many children with ASD drop out of education due to the severity of anxiety and lack of support or face school exclusion because schools are unable to meet their needs.”

And what of the families? Renata Blower, who has spoken to hundreds of parents, said the damage caused by failure to diagnose and support autism in children is “immense”. “It ruptures marriages, causes breakdowns,” she said.

A spokesperson for Virgin Care said: “It was widely acknowledged that these services needed improving when Virgin Care took them on in April 2013 and much of these issues relate to the service many years ago. Over the last five years we have worked hard to deliver what we promised: more joined-up services, reduced waiting times and more support for parents.”

Many of the recent problems, they said, have arisen from “incredible increases in demand”. The company says that it ploughs profits back into making the improvements recommended by commissioners, and meeting this increase.

For change to happen, there has to be a genuine desire within government to help, and that is missing. Schools must be adequately funded so they can provide the help set out in education, health and care plans. Support should not be withheld to save money, but offered open-handedly, for as long as it is necessary. And cases like Alice’s should be managed by a single person, who can marshal the teams involved and make sure everyone shares the same information.

Alice is now 16. When she is not consumed by anxiety, she is a loving, affectionate girl with a wonderful sense of humour and a contagious laugh. She is also a skilled cook, who can effortlessly knock up perfect cakes, or her signature dish, risotto with butternut squash and feta cheese. She works weekends in a busy local pub, where she assists the chef with food prep. She has a handful of kind, patient friends who understand her difficulties.

In common with other girls with autism spectrum disorder, she has learned to mask her many difficulties. But underneath the cheery surface that the outside world sees is a vulnerable teenager who still struggles to make sense of non-verbal cues, as well as many written and spoken words; who finds change exceedingly stressful. Thankfully, Alice is also tough and fiercely determined. Given all that is ranged against her, it is just as well.

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