An unpaid carer’s life: a cri de cœur

The guest post you are about to read from a good colleague builds on an earlier posting which also concerns an incredibly troubling account of the health system’s approach to the care of a very distressed and poorly young person with disabilities. As with the earlier account, this posting again illustrates the challenges that many parents and/or carers face every day when trying to get help for their loved one with disabilities and why there is an urgent need for change.

Stop our staff our people too. Don’t make them feel like this.
I’m here to help, not be hurt
#Zero Tolerance
Aggression and violence towards our staff will not be tolerated

Above are the words that often greet you when you come into hospital. However, hospital staff are not the only ones at risk of being abused. The reality is many parents of disabled children and their children are not being respected, not being ‘heard’, not receiving the treatment they deserve: and many describe their experiences of interacting with the hospital system in terms of ‘hurt, aggression and indeed abuse’. In this article I discuss the issue of false allegations and safeguarding referrals that are being made against the parents of disabled children.


Parents of Learning Disabled Children

Many parents of learning disabled children are often told what a great advocate they are for their child. Glowing comments are written in ‘child in need’ reviews, stating what an amazing job we are doing. Despite the tiredness from our endless role caring for our child, we are pleased that the commitment we show to our child is recognised by those professionals regularly working with us.

We are carers, mums, advocates, secretaries, teachers, therapists and nurses. Many children with learning disabilities are non-verbal, many cannot express when they are in pain. Parents of disabled children know their every gesture, sound and movement. We know when they are not well. They look to us to help them. We are their voice, their advocates, their protectors.

Being a carer is a job. We may not be paid, we may just be mum and dad but we are experts in our learning disabled child.  We are often referred to as “such a bodies mum/dad” … “Mum says this; dad says that”. We often feel as though we are not respected, that our opinions do not matter. Sadly, some people label us as difficult. We are not difficult we are frustrated and fed up with a system that does not always respect our knowledge and puts our children at risk.


I am here for help, not to be hurt

For me, and I am sure for many others, the hostility we receive in the hospital environment is often the worst. Personally, I absolutely dread taking my child to hospital but I go as I know my child needs help and I expect them to get that help as any other person would. I naively think, maybe this time it will be different.

Unless there is a trained disability nurse available and unless we attend during their working hours (which tend to be only weekday office hours), we seem always to be confronted by a lack of understanding and a lack of knowledge as to how those with learning disabilities present when poorly. I have to spend hours (days even) endlessly justifying that my child is ill. On many occasions we are simply not believed. Can you imagine what that feels like? Knowing your child needs to go to hospital for help but knowing from past experience that you are going to have to endlessly justify their illness from the moment you walk in. You’ll be subjected to comments such as “they seem perfectly happy to me” or “they aren’t crying as others do”, or the best one “it’s just challenging behaviour”. At a later date you’ll find comments about you in their medical notes. “Difficult parent” “not accepting their disability”, “exhausted parent – needs respite”, or the worst, “child is aggressive”, “parent won’t accept challenging behaviour”, “parent not coping”.

Many children with learning disabilities cannot communicate pain, they are often trapped in their world. Thus, a change in their behaviour is sometimes their only way of communicating – it is a strong indicator that something is very wrong. The vast majority of hospital staff I encounter never seem to understand this. As their carers we speak for our child. But our knowledge of them is often disregarded. Instead health professionals who have known them only a matter of minutes confidently say there is nothing wrong. Whilst you explain how your child is presenting, how they are not their normal self, they sit there nodding at you. After years of experience, you know what they are thinking, you know that ‘nod’. You know they aren’t really engaging with what you are saying, and the more you try to explain or show videos of how your child looks and behaves when not in pain, the more desperate you know you are starting to sound.

Whilst they might be a health professional, they are a stranger to you and your child. They know nothing about them. Sometimes they seem to think that your child doesn’t feel pain as others do, or that they simply cannot feel pain at all. On numerous occasions they do not even engage with your child.  I’ve had many of these experiences. It is exhausting, upsetting and terrifying.  It may sound a strong thing to say – but I have often been treated with utter contempt in hospital: made to feel that it’s my fault – they I am just a parent that can’t cope.


Safeguarding referrals – the latest tool to cause harm

The latest trend that is sweeping across hospital trusts is the reporting of parents to safeguarding.
You might well be sitting in the hospital room caring for your child, thinking the medics are helping you, waiting for a plan of action for the day but in reality they are busy focussing on how to make a safeguarding referral to get rid of you.

Parents and the child can then be labelled as “mentally ill” or as “making their child mentally ill”, that “there’s nothing wrong with them physically and they won’t accept it” or “it’s just challenging behaviour and the parent can’t cope”. Can you imagine? Medics that have known you a matter of hours or at most days, are making false allegations because they have no ability to understand your child and no time, patience or inclination to listen and understand. At times like this the ever-present power imbalance between carer and professional becomes stark: because you have dared to question them, dared to say “you are not listening to what I’m saying, my child is ill”, because you dared to say “no, I do not agree”. Imagine if it wasn’t just you up against them, if TAs/teachers from school as well as other professional’s families and friends could be there to support you – to say there is something wrong, to say you are not making it up, – it would not be several up against one tired parent. It is not a fair battle.

Not infrequently many parents with learning disabled children have experienced hospital negligence before, they know they have to fight for their child to be understood. They know they have to fight for help.  Using the “safeguarding” card is a pretty effective way of getting rid of the “annoying parent” and the “difficult disabled child”.


Abusive behaviour against parents

Do professionals realise the harm that can be done to a parent and child by making a false allegation? Do they understand that some parents may never recover from such allegations? That the parent may not have had mental health issues when the safeguarding referral was made but that they may well have them by the time it is over. They may never be the same person again.  It is abuse of a mechanism specifically created to protect young people from harm and neglect, and it is being misused by medical professionals to cause parents unnecessary distress and harm. The best way  to get rid of the difficult parent is not to play the safeguarding card – but to listen and to accept that what they are telling you is almost certainly what the child would be telling you if they were able to express themselves with precision: that this may mean you don’t understand what is wrong; that they may therefore require other tests – tests you’d almost certainly require if it was a fellow professional confronting you with this story – and not a disabled child and a distraught parent.  Munchausen’s Syndrome by proxy – fabricating / inducing illness as it is now called – is an extremely rare condition – but mis-diagnosing and failing to provide appropriate treatment for disabled children (and learning disabled adults) is sadly all too common.


Are we able to prosecute staff for the abuse they inflict on us?

And when those safeguarding referrals aren’t accepted or are not pursued, is there an apology? Is there action against those professionals for inflicting harm? Is there action against them for failing to investigate and treat a child when other health professionals discover there is actually something wrong with the child? When they discover the parent was in fact right. Do they compensate the child for the pain they’ve been left in for months on end?

Can you imagine what the child is thinking when they see their parent put through this trauma? They probably want to scream out, I am ill, my mum/dad is right, why is no one listening to them, why are you hurting them for trying to get me help and why are you leaving me in this pain?

Just as hospital staff have the right not to be abused or bullied in the workplace – the same rules should apply to learning disabled children and their parents. No parent should be abused or bullied by medical professionals who fail to understand the enormous power differential that exists between them and those who need health care; who fail to understand the enormous knowledge differential that exists between a parent’s understanding of their child’s distress and their understanding of that child’s ‘normal’ behaviour’. No child’s illness should ever be ignored, simply because staff cannot exercise some basic humility and simply listen and try to understand.

To the health care professionals (and I appreciate not all medics are guilty of this): why would we want to harm our child? We’ve given up our lives for them. We care for them 24/7. We are experts in them. We know their every sign.  When we ask you for help, instead of helping us, why do you make our life even more difficult?  Without us, we know our children would not get treatment, we know ultimately they would not survive. We know this because we’ve seen the way many health professionals have treated them all these years. And we know it will only get worse once we are not here to fight for them, LeDeR illustrates this. The sad reality is – we know that there are no penalties for not treating learning disabled young people equally – that in health care settings in the real world safeguarding referrals are only made against parents.

Posted 8 June 2021