Time to hear the voice of mother and more importantly the child.

Family courts and family law in England and Wales are to make things clearer?

How is this going to work?

Will the voice of those that matter be heard? That is the young person, their prime carer – mostly their mother and the family unit. Surely their voices are more important than any others? Yet we never hear those voices or rarely and mostly only when devastation has caused outrage.

Is it about time that changed?

What studies are there that look at the mother’s instinct of their child’s health and wellbeing and how correct are they? 

How many times have hospitals got it wrong and the mother right? I would suspect that this is never noted down. This I would suggest is where we go wrong. Not getting to the truth of a situation leads to misinformation and the same mistakes being made.

How can we be sure we know all the facts and have balance if the family, mother or child's voice is never heard. It is only when the child is 18 that their voices can be heard and by then it is too late to make amends for the damage done.

Now consider - how much research has been put into how mothers negatively impact on their child/children? This is all done from a very vacant and technical viewpoint that has nothing to do with being human, sensitive or empathetic.

One illness that for decades has not been listened to is Myalgic Encephalomyelitis (ME) the history is filled with academia and bizarre beliefs like "malleable brain" and "Neuroplasticity". If these theories worked then eating chocolate would always give you a happy buzz or you would never eat it as you have trained you brain and conserve your hips, brain training games would make me a genius and our educational system would be the finest in the world. However, we are more complicated and have amazing ecosystems and cells that entwine with such delicate complexities to untangle will take more than just saying I am happy and making life better. 

Why is it that one illness taken over by those that think they can control our DNA, Cells by denying the reality of the patient and why did the NHS fund such a trial 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3049137/#__sec6title

To view a mother/parent in such a manor when their child has a disease that is disruptive and puts all of their bodies systems out of kilter... well words quite frankly fail.

How can you advertise a trial as a treatment that most will recover at 6 months in the first place and no authority think this is wrong? Trials are set up to prove or disprove. All of the trials on children with ME do not record harm, do not give heart rate monitors to make sure children keep under the anaerobic threshold. Those that research on children with this devastating disease cannot or will not explain they cycle of Post exertional malaise (PEM) and why even doing a small dot-to-dot can have the same response as walking a mile. Why convalescent rest is needed after activity and in a PEM state and how or why this happens. They do not track the PEM cycle and they do not make if the child has more time with feet on the floor time.

For a researcher not to know why this is important in ME is unforgivable.

To call our children MUPPETS is beyond insensitive and yet they can openly do so, who is there to stop them?

On their flawed science so the courts make their decisions about the parents behavior. The authorities are OK with this?

The difference between the lived reality and that of academia is acutely astounding. If there were studies into how the mother’s instinct makes a positive impact on the outcome of long-term conditions, or acute ones, I wonder what we would find. How many deaths would be avoided if the mothers voice was acted upon with more respect and urgency?

Sir John O’Hare QC who headed up the 14-year-old inquiry into avoidable deaths of young children, in the Royal Belfast Hospital said (I will paraphrase for brevity) “there was an “indefensible” culture in which parents were “deliberately mislead” by doctors and health trust chef’s intent on “avoiding scrutiny” and protecting their own reputations.”

How is there going to be clarity within the family courts, when no one listens to those on the receiving end of bad practice or false allegations?

Does the public understand the position parents are in with the court restrictions, when they are accused of Fabricating and Inducing Illness (FII), even when proven innocent? How does that position impact on parents when they are trying to pull together professionals, to get the right treatment for their child.

I was recently told by the GMC that there is a differing opinion on a condition my son suffers from. Healthcare should not be about politics or opinion, but on individual medical history and research along with no more harm and probability. No one said healthcare was easy. 

Avoidable suffering and deaths are happening to children throughout the healthcare system and most are covered up with accusing the parents of FII, belittling or gaslighting them. As Sir John O’Hare QC suggests; a culture has been allowed to build up.

What are the courts going to do with the misunderstanding over complex cases and where fraudulent or flawed research give the wrong treatments or advocates procedures that are causing harm or death? 

Covered by clever and manipulation by academia and not balance of all facts of known experiences  hampers diagnosis, treatment and informed consent. This also gives both professionals, barristers, lawyers and courts along with the public the wrong idea about FII or the relationship of a mother to their child, and of a child to their mother. This normal bond of care is being broken for gain or an agenda well meaning as it might be. The voice and experience of the parents are not heard and therefore no balance. How do we get balance back?

There is no common law duty of care to parents, this has I believe, led to the explosion of FII. FII is used as a method of “avoiding scrutiny”. Have courts; trying to protect children, now becoming a weapon used against parents?

The mounting case of parents with children that have hidden illnesses accused of FII:

Chronic Fatigue Syndrome (CFS) and the PACE trial is a battle of establishment Goliath against a severe hidden illness. Over 200 parents accused of FII (again mostly mothers but not exclusively) none have been found guilty. You just need to look at the Tymes Trust webpage to see a condition that sucks the life out of our children. The Tymes Trust have been battling against an opinion without foundation for decades now. Many children would have been lost if it were not for the Tymes Trust tireless efforts.

CFS is a controversial name brought in to mask Dr Ramsay defined ME.  

The main telling sign of ME is that symptoms are exasperated by any form of thinking, day to day task or emotion - that can be getting excited and laughing as much as feeling confined by the lack of energy. Basically put, anything that uses energy takes it out on the body, similar to diabetes.

A misconception that has been heavily played upon, is that avoidance of exercise was the problem. When this did not stick, it was avoidance of living or depression. Then came the deconditioning theory. You cannot image the damage this misconception has caused a whole plethora of illnesses. This has enabled many to Gaslight a whole community of the invisible illnesses/disability.

The truth is; as anyone who cares for a person with ME knows, there is a cycle that cannot be replicated by just an emotional outburst of unwillingness ­- of not wanting to engage with life, it’s called PEM, and is how you can diagnose ME. Ramsay explained that ME had an alarming tendency to become chronic when a small amount of energy is consumed and which takes a prolonged period to regain some energy back. This is now being taken very seriously in research terms, but it has taken from 1986 to now, to be seen as the path of discovery.

The PACE trial in 2011 set out to prove along with the DWP and the MRC, that this condition was treatable with Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET), this trial data was not released openly or freely, as they said they would. Instead the community had to force the data to be released while being charged as vexatious.  Appalling accusations freely heaped on those that suffer, by the media and recently Executive Chair of the MRC Professor Fiona Watt.

The data from the PACE trial now reanalysed by many, has been shown to be steeped in flawed methodology. Even though the harm of those treatments are in plain sight in rooms all around the UK, they and their suffering are dismissed.

To cover this appauling use of research children are being made to pay the price. Further research promised to show this is still a valid treatment and so the DWP and MRC can hold their 

Ehlers-Danlos Syndrome (EDS)

This is a genetic condition difficult to diagnose due to opinion, lack of understanding and funding into research. Again, doctors are targeted and sent to the GMC as with ME if they try to help with differing treatments and stand up for those that suffer. EDS has never really been given the attention it deserves, just like ME. Children can end up being tube fed and put in mental hospitals due to lack of understanding.

We do not know if vEDS is as rare as we are told, but we do know life expectancy is shorted due to vascular rupture, with median life span of 48 years. though this does and can happen at any time as even young people die as a result of a rupture. Why are courts ready to hear that parents are saying symptoms are worse than they are and keep taking children away from loving homes? Why do we not keep a track on their progress? These children are lost and forgotten in the system unless the mothers/parents fight hard and long battles. Simply trying to get tests can leave parents under threats as doctors are being taught to look out for these conditions and mother fabricating the complexity and severity of them. What hope of a diagnosis is there?

Mast Cell Syndrome (MCAS)

This is an immunological condition with near-anaphylaxis or anaphylaxis attaches. Why are so many of these conditions put down to anxiety. Mast Cell inappropriately release chemical mediators which result in a range of chronic symptoms and is rarely looked at. Again, this condition would take endless visits to doctors to get a diagnosis. There is a blood test looking for Tryptase; a protein that is usually elevated. Ultimately a bone marrow biopsy is the definitive test. Hopeful one day as with celiac this will become just a blood screening that is easy to do. Unfortunately, the symptoms are just linked in with mental health issues and the new Improved Access to Psychological Therapies (IAPT) so now parents have a bigger problem.

Post Orthostatic Tachycardia Syndrome (POTS)

Again, this is complex, and little understood to how prevalent this condition is and has been dismissed as a condition of little significance. The research would suggest otherwise. Thought to be anxiety driven it is now proving that it brings on anxiety due to the change of heart rate and blood pressure, with adrenalin surges. Mothers are again suspected of saying the condition is worse than it is, but when you consider the symptoms are so vast and some mimic heart attack, could you really blame mothers for their concern?

Lymes

This is caused by a tick bite and there are many symptoms with many reports of problems throughout the body. Although there is a blood test, this is very rarely asked for, and is known to be ineffective in many cases.

We should have learnt lesson from the Cot deaths and shaken baby syndrome

These are now recognised as having many causes and why babies are given Vitamin K. If these cases had gone unchallenged, we would still be blaming the parent, mostly it has to be said the mother.

How many children are caused undue suffering or die in care of these complex and intertwined conditions. How many parents unprotected by laws and are seen as insignificant collateral damage that protects children?

Are courts and research doing more harm due to lack of balance, when the voices of those that count the most are silenced.

It is now time to hear the voices that give the balance back to society, the voice of mother and more importantly the child. Will this ever happen?