I am not a fan of the system that’s responsible for my son’s care and education. It’s complex. It’s running on empty. It’s on its knees. There’s no money. Provision is scarce. There’s not enough practitioners, too many children. Stretched, underfunded, at breaking point.
There are so many good people who work for the NHS, for the local authority, for social care, and even for the government. I respect anybody who goes into a role wanting to help others and build towards a better future, but it’s not working the way it should be. The system is broken.
Like all other parents of children with special needs, I have had to learn to fight for my son. I’ve learned to speak up when something doesn’t feel right. To question everything I am told. To challenge authority. To not always take no for an answer. I have researched, gone on courses, and learned basic law. I have had to take my son’s therapy into my own hands and force or pay out for a way for him to access what he needs.
That is not right. When a parent finds out their child has a disability, the biggest challenge that parent SHOULD be facing, is dealing with their child’s additional needs. The biggest challenge SHOULD NOT be dealing with a system that will do EVERYTHING that it can, to AVOID giving your child the support and intervention they need, because the money and the provision just isn’t there.
I’m not talking about the ‘rolls royce’ of provision, simply accessing the most basic support and therapies to ensure a child can thrive and grow up to reach their potential.
Every child should be given that opportunity.
This was making me angry enough… but then I saw the Dispatches documentary last week ‘Under Lock and Key’. And during that hour, I realised with utter horror, the true nature of what ‘could’ lie ahead for my son with the system that’s designed to help him.
You can watch the documentary here
Three teenagers / young adults, two with autism, all with learning disabilities, complex needs and challenging behaviour. They were sent to the hospital ‘St Andrews’ in Northampton.
These young people were admitted to the hospital via the NHS which describes itself as “The UK’s leading charity, providing specialist NHS care”.
Their parents believed and trusted that their children were going to be looked after. That they would be given the specialist support and therapy they needed, by staff who understood their conditions and complex needs.
What each of these young people experienced is the stuff of nightmares. They were physically restrained on regular occasions, denied food, over medicated to keep them ‘under control’, kept in isolation for long periods of time with just the screams of other patients in the next room to listen to, (one 15 year old girl was kept on her own, in a ‘cell’ for nearly 2 years with no socialisation). Outdated and dangerous forms of restraint were used regularly, which can cause death by suffocation. Their disabilities were overlooked and the resulting behaviours were punished instead of being worked through.
Every visit, the parents would watch helplessly as their child withdrew, lost weight, and fell apart in front of their eyes. One young man would often go into lockdown, unable to speak and paralysed with anxiety. Yet the parents had no power, no authority to get their child out of this place. They were ‘stuck’ in the system, with not enough suitable alternatives in other smaller and more suitable care facilities. These parents were absolutely terrified for the safety of their children. One believed that her child was going to die.
Remember, these teenagers did not do anything wrong. They didn’t commit a crime, they aren’t outlaws. They are young adults with complex needs that need help and support.
By St Andrews own admission, many of their patients had the potential to progress in the outside world with the correct support; however under St Andrew’s care, they were treated like animals. Like a problem of society. Like something to be hidden. It wasn’t therapy, it was containment. Containment of people considered to be less important, less human, then others without disabilities and complex needs.
Through the battle of their parents and their MP’s, two of these young people have now been transferred. They are enjoying a happier life in their new placements, getting amazing therapy from kind, warm hearted people, and have begun a journey towards a happier and more fulfilling life. Respected and celebrated for who they are. Given methods to enable them to cope in their environment and develop self esteem & confidence.
They no longer ‘need’ to be restrained, they no longer ‘need’ to be medicated via intermuscular injection every single day until they are zombies. They are doing really well.
The other young man, he never made it out of St Andrews. He died a sad, undignified and painful death, after staff failed to recognise that he was suffering from extreme constipation; a common side effect from a medication they had prescribed to him. They didn’t call an ambulance for 4 hours. Even when he was vomiting his own excrement.
After a botched and biased first inquest, the second inquest revealed that there had been 3 other similar deaths to this man, on the same ward, within 7 months of each other.
It is a complete and utter scandal.
This is a system that should be taking care of vulnerable people. I hope to god that it never happens, but one day, my son may need intervention that I cannot provide. and if this happens, is this what is waiting for him? The very thought of him being alone, terrified, roughly handled and treated like an animal is enough to absolutely devastate me as a mother. I can’t even fathom it. It would kill me. And yet, there are parents, like me, who are right now, living through this nightmare, unable to help their child.
I am devastated that this is what our society comes down too. I am terrified for the already unpredictable future of my son. If I can’t trust the people who are supposed to help him, where is there to go from this? What do I do?
The fear is real and it’s crippling. And I want to stop this, I want to invoke change, but I don’t know how. I am so angry, but I don’t know how to change things.
For the first time as a mother, I genuinely fear for my child’s future; not because of his disability, but because of the system that is designed to take care of him.
And that is a truly unbelievable and terrifying situation.